Tag Archives: Obliteride

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

 

Lead Bellied Clouds

Standard

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Wait and See

Standard

IMG_2792Strange how you can have expectations, just ideas you’ve grabbed from where?  Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat.  Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week.  Upon what basis did I come up with those numbers?  Out of thin vacant air.  Today marks her 37th day in the PICU.  Today we begin our 6th week.  I remember a friend telling me they were in the PICU for two months.  “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight.  Last Tuesday, 2/17, we were scheduled to be transferred to the  BMT (Bone Marrow Transplant) team.  We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin.  It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come.  In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal.  The reality is sinking into me that she may never get to transplant, or at the best, it could be far off.  A summer gone.  The doctors tell me we must be patient, and wait and see, that it is often best to be patient.  Patience, yes, I know something of patience.  But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans.  While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent.  To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it.  Her heart rate and respirations trended up slightly and there was the issue of nausea to consider.  They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms.  While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today.  I feel disheartened.  Yesterday they decided to put her on Digoxin, another heart med.  Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal.  The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone.  They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels.  Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.”  Her Lasix draws off potassium which they replace in her TPN (IV nutrition).  On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.”  It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors.  Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure.  Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo.  I don’t feel very optimistic.  The BNP hasn’t gone down really.  We’ll see.  She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons.  It was originally planned for Tuesday solely based on protocol.  If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on.  As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering.  However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation.  At this point, her severe heart failure makes anesthesia more risky.  Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team.  Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly.  Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks.  I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened.  So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast.  After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down.  The nurse re-loaded her cup and she finally got in the minimally required amount.  The results of the CT were mixed.  “There is minimal residual wall thickening involving the sigmoid colon.  The rectal wall thickening has nearly completely resolved.  New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening.  There is a slight interval increase in degree of surrounding fat stranding.  The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.”  So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete.  But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now.  Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema.  These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting.  I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation.  My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near.  I love that she too is so passionate about finding a way through for her.  We are both assuming her marrow remains in remission.  So she proposes we put her on Azacitadine given that it worked before.  (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.)  I wondered about possibly using Decitabine since it’s a little more hard-core than Aza.  We do still have her chloromas (solid leukemia) to consider.  She said she would consult the other AML docs.  She also mentioned Clofarabine as an option.  The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan.  Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine.  All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer.  Wahoo!!!  I love options!  After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant.  But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is.  I couldn’t help myself, knowing all that has transpired over this last month.  I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day.  Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars.  Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days.  This puts her total bill since diagnosis well over 5 million dollars.  Isn’t that staggering?!  Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?!  What if that money could be put toward cancer research?  What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer?  What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks?  We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research.  Such an exchange is not possible.  But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help.  You have felt powerless to do anything to help Allistaire.  Giving to cancer research may not feel like directly helping Allistaire but it is!  First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey.  It is tangible.  I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more!  Will you stand beside me?  Will you give?  And you know what?  We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research!  Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission!  This is not some ambiguous, indirect, vague blessing.  Cancer research is precisely what provided her last transplant which has given her life the past two years.  You say you want to help.  Your heart is heavy with grief for us.  You wring your hands wondering what you can possibly do.  GIVE!  Support cancer research at Fred Hutchinson Cancer Research Center!  It’s not hard, it’s not complicated.  Give.  Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.IMG_2791 IMG_2790

Weeping

Standard

IMG_2777Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat.  I feel I can’t breathe.  I hold back tears more times than I can count.  I’ve felt frantic, in shock.  She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.

Her BNP today is 4300.  I don’t know why.  “Heart Failure,” is all I hear now.  It supersedes everything else.  Her echo was terribly bad on Monday.  Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin.  They tear and burn and with all my flesh I despise them!  I hate them with violence and I want to tear them to shreds.  I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO!  You CANNOT be.  You are not allowed here.  You are forbid to bind yourselves to my child!

I’ve been trying to get her to eat.  Ten bites of chicken noodle soup was the goal for the first half of the day.  Three bites of apple sauce.  So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.”  I strain to find some other cause, some other plausible explanation.  And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero.  Sunday it was 30, then 93, 75 and today 172.  Her belly pain has increased substantially with pretty consistent pain throughout the day.  My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut.  This causes the pain and “worse before better,” just like the infusions of granulocytes did.  There is a lot of evidence too that she is having substantial pain related to anticipating pain.  This ICU stay has terrified Allistaire like nothing I have ever seen.  It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear.  She has experienced so much physical pain and she feels she can trust no one not to hurt her.  Oh it hurts my heart, it hurts, it hurts.  So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.

I have long sought to yield Allistaire to the Lord, to lay her down at His feet.  By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me.  While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses.  But oh, how it hurts so bad.  Suffering and loss are not some abstract yielding.  It hurts down to my fingertips, they ache with blood saturated with pain.  My flesh throbs with the deep, deep sadness of loss present and anticipated.  In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes.  I walk, I walk, intimately aware of every detail.

Yesterday morning I sought to be still before the Lord and wait patiently for Him.  The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide.  I see our doctor walking down the hall before me, whistling.  For him, he knows we are doing all we can and in that satisfaction he can rest.  But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough.  It is not satisfying to me.  I want Allistaire to live!  It is hard for anything less to ever feel like enough.  I went home to Montana this past weekend and it was good.  It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life.  Oh how I long with desperation for ordinary life.  A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves.  It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort.  I cannot get that blue bucket out of my vision.  We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be.  I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live.  Those memories precious, feel like distant, far off lands you wonder if they are truly real.

Yesterday morning I sought to be still before the Lord and wait patiently for Him.  I rose early to exercise, shower and eat breakfast.  As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad.  They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant.  They have been given a room there because this sweet girl is now on Hospice.  Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant.  I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her.  Nothing left.  They must give into that beast.  And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath.  I looked upon cancer and its devastation as I went to get breakfast.  My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.

I’ve always known it could come to this.  But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom.  I weary of numbers that slice.  The thing is, I know the Lord will be with me.  I know that He will hold me up as He does today.  It seems too awful to endure and if so, that means I won’t have to endure it will I?  No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure.  But why, why must this be?  What is the point?

A friend of mine whose son died recently fears that her son’s death was punishment from God.  How I long to offer her words of life that would take away this overwhelming burden.  I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned.  Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.”  This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life.  What sort of exchange is this?  Why this wretched suffering so God can get glory?  Does He really need more glory?  My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole.  But this is not the end point, His glory is not His aim.  His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life.  He seeks glory that we might know His love, for that is His ultimate glory, His great love.  He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers.  He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.

Why must Allistaire suffer?  Why must I?  In my finite view with my finite heart I can only guess and grab at a handful of small reasons.  But what if it is for my friend?  What if in my brokenness she can see the hand of God extended?  What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life.  It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible.  Who am I to liken myself to Christ?  What is my life?  It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him.  Shall I suffer?  How shall I live out each of these days that seem to cut and gouge relentlessly?  I walk, nay, I am carried by Him.  I now rejoice in the dependence in Him I once reviled.  I know not the days ahead, I even dread the hours that will bring by the cardiologists.  I don’t know how to let go of this fight.  I don’t think I shall until there is nothing left, nothing left.

Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me.  Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you.  Spirit of God, help me to be still and wait patiently for you.

Here is a link to sermon by John Piper about the blind man.02131519180213151920

Stagger, Tremble

Standard

IMG_2751We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  (2 Corinthians 4:8-9)

Hard pressed.  Perplexed.  Struck down.  The weight of sorrow presses so heavy on my brow.  Sensations so familiar, so brutally common.  How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through.  I have never had a stalker, never been abused.  But I taste the mineral tang of terror reinforced again and again, blood on the tongue.  The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare.  My heart exposed from tearing flesh.  Assault, violence, silent snuffing out with dark weighty force.  I weary circling round and round with this foe.  Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief.  Relentless.  I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue.  Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance.  That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it.  Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar.  Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land.  And I yearn for you.  My whole being angles forward in desire, attraction.  Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place.  Day by day I must walk.  Another day with numbers that do not change.  A BNP that rises here and bobs briefly down, never nearly low enough.  Every day the same, the same, the same, “no data,” the labs read.  “No data.”  There is nothing, not a single white blood cell in 28 days.  No sign of marrow stirring.  Silence. Absence.  Cavern empty.  And yet, she has changed.  That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising.  Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact.  Allistaire Kieron Anderson is emerging from this ragged fray, this assault.  I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs.  Peach fuzz.  Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin.  She plays and talks and wants me to see what she’s done, what she’s created.  I swoon and am drawn in, her irresistible pull of delight.  I adore her, my whole being arches forward, captured by the beauty of her sweet spirit.  I cherish her.

Heart failure.  Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage.  Heart failure.  I tell Dr. Hakens how I hate to hear those words.  “Well, you can’t sugarcoat failure.”  Another blow.  Monday’s echo was devastating.  The door to transplant slammed closed.  Her ejection fraction was 29 and shortening fraction 12.  The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination.  What must be do to stop this torrent of loss, I wail?  Are we doing all we can?  We push through, we push, we walk forward.  There must be a way, there must.  This cannot be it.  Oh don’t let this be it.  How can we accept defeat.  How can we just let this bright force slowly fizzle and die?  All we have known for three years is FIGHT!  How now can we surrender; raise the white flag and say enough?  Death as end point has always, ever been there – stark on the horizon.  A black silhouette impossible to disregard, impossible not to recognize.  But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won.  But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse.  This image wounds in a uniquely awful way.  I breaks my heart a fresh.

We have devised a two-part plan.  With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted.  She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis.  Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function.  It is more of a stabilizer and optimizes blood profusion.  This has been essential with the great fluid load of her infection and need for healing of her gut.  In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening.  Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.”  Thus Tuesday morning began with her first dose of Enalapril at half the max dose.  That night her Milrione was weaned down from .47 to .3.  Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25.  The goal is to also add on Carvedilol today and Spironolactone tomorrow.  Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.”  Spironolactone is a diuretic than helps reduce fluid retention.  Enalapril is an ACE inhibitor.  ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels.  As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile.  I am constantly, non-stop blown away by nature.  The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life.  But I cannot deny the wonder of it all.  The spectacular, pure extravagant beauty of God’s creation.  He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant.  At this point, her transplant is scheduled for March 19th.  This gives very little time for her heart to recover as these medications are not necessarily fast acting.  Before I even talked to Dr. Gardner, I knew this was likely the course we must take.  At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle.  It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month.  The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off.  More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her.  The measles virus can linger for 1-2 hours after someone infected leaves the area.  It hangs in the air, impossible to detect and thus avoid.  In a person with a normal immune system, measles can be awful.  In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer.  Time is a scarce resource in the life of a person battling cancer.  Time is a luxury.  If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks.  Being undetectable in no way means it is nonexistent.  Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken.  If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia.  Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic.  For the last 28 days her marrow has not produced one blood cell.  In her last round of chemo, her marrow began to recover after 14 days at zero.  This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced.  I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood.  Thankfully, there continues to be no evidence of blasts.  Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything.  As is simply ever the case, we wait.  We wait and see.  We wait.

Every single day feels like an impending death sentence.  Every single day a new number can indicate the tide has turned once again.  This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420.  Everyday begins with these numbers.  It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow.  Waiting is hard, really, really hard.  But I have discovered a secret, a mysterious way of God.  He loves to make us wait.  Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own.  We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope.  We have set our eye on our desire immediately before us.  But God…He is over all, under and around, above and below and on all sides.  His view engulfs our little view.  He waits.  He waits with us.  He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand.  He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face.  This is His aim.  This is His yearning, His craving, His unbridled passion, to draw us to Himself.  It is not that He is unmoved and cold toward my bleeding heart.  It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye.  It is that He has clarity of vision.  He declares that life comes solely, only, directly from being bound to Him.  Love is patient.  Translated in the King James, it says love is long-suffering.  This is the very first descriptor of love.  God is love.  God is long-suffering.  He suffers with us in our sufferings.  He endures with us.  When at last will we come to the end of ourselves and see that He offers us life.  Life abundant.  Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters.  For You have filled this space with your bounty, your halting beauty, with light unearthly.  I swoon as I fix my eyes on You.  You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me.  You satiate and I come running for more, more of you Lord!  I come weeping, weeping, calling out for mercy.  Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do.  When we join our resources together, we really CAN make a difference in the options available to children like Allistaire.   By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

IMG_2735 IMG_2744 IMG_2745 IMG_2749 IMG_2754 IMG_2758 IMG_2760 IMG_2763 

Worse before Better

Standard

IMG_2628_2“I just feel like I could cry,” the nurse said dejectedly with arms slumped at her sides.  I totally knew what she meant.  All day I felt the strain of tears pressing against the back of my eyes, hot and insistent.  With one hand I held the X-ray plate, the other pressed up against her leg, the lead apron demanding the depression of my body.  Allistaire shook with pain and the multitudes of lines and agitating chunks of plastic surrounded her.  “I can’t do it,” she cried over and over.  “But you must, you must.”  A great sigh escaped my lips as the X-ray tech went to check if the picture was sufficient.  I hadn’t even known I had mistakenly allowed my weariness to see light until he said, “Almost done mom, just one more.”

I push back, flattening the words of the podcast on how X-rays work.  Attend to the task at hand.  Disregard the weight of the lead.  Ignore the little lead heart-shaped shield they put over her ovaries for the chest X-ray and then remove for the 2 abdominal X-rays, every single day.  Forget that a CT is worth 250 X-rays.  You did not hear the suggestion to ask your dentist if that X-ray is really necessary.  Grip your child and ignore her protests, the beads of sweat on her brow and her labored breath because the pain won’t let up.  Now quick, onto the other tortures, lift her up this way and that, change the sheet and pull the measuring tape under her back to measure the distention.  Press her hands and toes looking for capillary refill.  She is exhausted.  So unremitting is the pain that she hardly sleeps and the turmoil in her gut breaks through multiple times an hour.  The pain meds are increased, boluses accumulating and new meds added.

It feels like we’re going backwards, like the past three days have never happened.  Her chest rises and falls rapidly, heaving.  Back on goes the Milrinone.  Up go the pain meds.  Increase the flow of the cannula.  Ease the burden on that left ventricle of her little heart, beating so hard with terror and with fight.  After two days of granulocytes, the neutrophils display their fury against the invader.  Their number has increased from zero to almost five thousand on Wednesday and after the second dose they are over seven thousand.  Who can understand their mysterious wisdom, how they know where to rush in haste to battle, to mend, but it shows in the incredible increase in pain and all night she has been feverish despite regular doses of Tylenol.  I guess this is the worse before the better.  It’s hard to watch and strange to be forced into the paradox of cheering and gratitude when everyone around wants to throw up their hands – what more can we do for her pain?  How high can we go with this dose?  What will calm her anxious fears?  We’re not even living it, just bystanders, constantly racking our brains to come up with what combination of meds in what doses and at what times will finally yield some peace for her.

Fourteen hours in my too-tight pants and socks that agitate the ever dry skin of my legs.  So irresistible is the scratching that streaks of blood line my ankles and calves.  I listen to the message on the phone in Ron Don about some package that has been there for days, waiting for me to pick it up, to respond to its little incessant presence.  But it is too late and in the morning I will rush again to the hospital to relieve Sten from his long night so that he can go nap for several hours.  I unbutton my pants that have pressed into my gut, unrelenting all day.  Another pair down?  Is that 3 or 4 pairs now that are too tight?  Another bit of myself goes skittering away.  No chance to exercise and some strange, frustrating need to eat.  How can I want to eat when all this is happening and all I do is sit in a room hour after hour for days?  I resist long but at last succumb to the warm comfort of the coffee cupped between my palms.  The hot liquid soothes as it goes down my throat, like a hand brushing slow across the forehead.  My hope is in this caffeine that perhaps somehow it can push back against that wall of fatigue that even recent good nights of sleep seem incapable of diminishing.

“I was wondering if it might be possible to make an exception and have James be allowed to show me how to pump up my bike tire?”  Before the ICU slammed out all other life, I had been attempting small steps to be more prepared for Obliteride.  Last years ride was fun enough to make me want to do it again, but so brutal that I knew I would be fool to not be better prepared.  My sweet mother-in-law generously has allowed me to borrow her bike, a fantastic bike made more so by its perfect orange frame.  What a strange color, orange. So bright, almost cheery, but with some sort of fiery force and determination.  It is a color to be reckoned with.  And out of the corner of my eye I would see it sitting there, locked safely in the corner of the bike racks.  I bought bike shoes I’ve been too afraid to use.  Little goals – take a picture of the pedals to buy the cleats that fit.  Check.  Get on the bike, oh but wait, I can see how to go one direction with the gears but not the other.  Thank goodness for google that yields the answer.  Tentatively, I ride, but not before I have walked my bike across the intersection.  I get to the Burke Gilman trail and feel slightly more at ease but anticipate the other cyclists speeding by yelling, “on your left!” And I try to make myself as slim as possible and hug the far right edge to give room.

Sitting on my bed later, I laugh at how tender my tail bone is. How in the world did I ever, ever get on a bike and ride 55 miles without having ridden in a whole year?  What a fool.  What an idiot.  But wow, who was that person, what carried her all those miles?  How did she say no, no to the aid car?  Was it not the pain of her own little girl?  The pain she has endured?  What is my pain, ever, ever, compared to hers?  I wrestle with my own heart, weeping and yet berating, what is my pain when I have been given so much?  She is here with me.  Who am I to let the tears come when I always see the grey eyes here and the blue eyes and the green brown eyes of moms whose hands now lay empty on their laps?  I have bounty upon bounty.  I have been given so much time that might not have been.  Such an array of armament has been brought to bear against the invader.  I have been offered unfathomable privilege to walk so far down this road of war.  How many mothers across this globe at this very moment weep and weep with limp child, eyes glazed?  But there they sit, the abundance and the ragged gaping loss.

I got on my bike last summer because I had so much to be thankful for.  I got on my bike last summer because my heart had been run through with the blade countless times.  There was ecstatic joy and severing sorrow.  I make little goals and devise little plans to get back on that bike, to acquaint my rear with the weight of my frame.  I stop the man from getting his own bike and ask, will you help me with these shoes?  I don’t understand how they clip in?  And he gives kindness to me a stranger, and he offers knowledge and extends encouragement.  Another man delays his ride home to help me figure out how to pump up the tire with the special pin, unlike the girthy simplicity of a mountain bike.  But then I flatten the tire utterly, inept at my attempt and sit feeling myself deflated despite my best efforts.  Her comes Seth again, I recognize his shoes and beard.  Again I entreat him to help me and he graciously pumps up my tire and instructs.  “What you need is the foot pump they have up in the bike cage, it would work so much better.” “Yes, but that is for employees only, ” I respond.

“Can you make an exception and allow James to help me learn how to pump up my tire?” I ask Jen in the Department of Transportation.  My hope is that they’ll allow James to teach me some basics that will help prepare me and give me a little more confidence out on the bike.  “Sorry, it’s just for staff.  It’s a liability issue.”  Before I know it, I’m gulping down barely audible sobs. The tears stream and I apologize, saying I have no idea why I’m having this response to something so small.  Before I know it I’m telling her there are some people who live, like actually live, in this building and are trapped here for long periods of time. It’s incredibly hard to find a way to exercise and all I want is some help to be able to ride my bike.  My spirit slumped and suddenly swamping waves of sorrow weigh heavy, an unconscious overlap of sorrow upon sorrow.  Perhaps it had something to do with the combination of hearing about the dangers of X-rays when I had only the day before been doing a bit of research on TBI (Total Body Irradiation), being prompted by seeing Dr. Ermoin, her radiology oncologist.  “Did you know that the Fred Hutch website says that TBI “is equivalent to being close to the epicenter of a nuclear bomb blast”?  “It does not,” he says alarmed.  “Oh yes it does.”  Only weeks before I finished reading the book, “Unbroken,” and vivid descriptions of the nuclear bomb dropped on Hiroshima.

Hiroshima.  My child.  Allistaire standing there in the gray devastation, the silent ripping of radiation particles colliding with her flesh, tearing at the fiber of her being, DNA sliced into ribbons.

I am powerless to stop it.

I wear the lead apron to protect my own flesh while her’s must simply accept again and again and again the devastation.

The waistline of my pants cut in and again I shift, trying to find comfort.  All I want is some help with my bike pump.  I am cut off from my home, my husband, my family.  I’m asking for help.  I’m ever in the position of being in need, but I’m willing to reveal my neediness.  I’m trying here people.  I grasp for help in folks passing by, going to their bikes.  Will you help me?  This person helps with figuring out how the bike shoes clip in.  That man helps with how to inflate my tires.  The first man helps again when I stand frustrated before the flattened tire despite attempt after attempt to get it pumped up.

Cancer makes you feel powerless.  Cancer isolates.  It’s just a tiny cell but somehow it seems to dominate everything.  All the forces of man are brought to bear against it, yet how it seems to ever overcome every effort.  You accept the destruction.  You say yes to the horror because you have no other choice.  You embrace, you praise, you rejoice in the weapons, pressing the collateral damage back, back to the periphery.  And the shrapnel of cancer slashes anyone in its proximity.  There is the slice of jobs lost.   There the bleeding hole of your relationship with your other child.  Time, seasons, swings of dark and light, leaves dead and leaves budding, friends living their lives and you just gone, gone.   Those too tight pants bring rage, bring silent tears you reprimand yourself for having.

All I want is to take my flesh in hand and have it yield to me.  All I want is to get my tire pumped up so I can get away from this building for an hour and breathe cold air and see something other than walls.  All I want is to fit in my clothes and not want to tear them off of me at the end of another day.  All I want is to fight back.  All I want is to ride my bike so this August, I can enjoy Obliteride.  All I want is to feel the power of my quad pressing down the pedal, speeding me away from this constricted, suffocating fight and closer to a cure.

I must give thanks to the little Hiroshima that will transpire in the basement of the University of Washington Hospital within those lead lined walls and door.  I must give thanks to the poison that decimates my child’s immune system and has left her vulnerable to these ravaging bacteria.  I give thanks because these are the forces that have taken years to understand and develop.  I fall on my knees in gratitude for the hundred of thousands of hours of research scientists endeavoring to unravel the power of cancer.  I give thanks for three years of life for Allistaire that could have never been were it not for cancer research.

I mourn and I wail because of that most wretched Hiroshima unleashed on my child, that killer not only of cancer cells, but brain and bone and ovary and pituitary.  I fall on my knees in grief for the poison that distorts the DNA of her cells and heart and skin.

I grieve years lost and rejoice in years gained.  For they are one in the same.

Obliteride is a grieving and Obliteride is a rejoicing.  It is one in the same.

This August, I will once again have the joy and privilege to participate in Obliteride which is a bike ride to raise funds for Fred Hutchinson Cancer Research Center.  One hundred percent of funds raised go directly to cancer research.

I now know how to pump up my tire.  Soon I will know how to use my bike shoes.  My bum is already getting acclimated.  As I trudge up and down, up and down the eight flights of stairs in the Forrest stairwell morning after morning, as I ride down the trail, as I feel the burn of muscles being pushed to do more, to go further, I smile.  I will one day fit into my pants again.  More importantly, one day there will be no need for Hiroshimas or poison.  One day cancer research will have found the way to fully harness the immune system and stop cancer in its tracks, without the collateral damage.  Maybe one day we won’t need a cure, because we will have found how to prevent cancer.

I’m going to keep getting on my bike.  I’m going to get on my bike in anticipation of this summer’s Obliteride.  I am going to get on that bike every single year the Lord gives me life and there are muscles that can move.  For I have much to be thankful for.  I have much to grieve.

How about you?  Where has the shrapnel of cancer lacerated your life?  Where has cancer stolen from you and caused your heart to grieve?  Where has cancer unexpectedly given you so much rejoicing and thanks that you never knew before?

One of my favorite quotes is this:

“It is the greatest of all mistakes to do nothing when you can only do little.  Do what you can.”

If you would like to support me in raising money to fund cancer research click HERE

Help me OBLITERATE cancer!!!!

 

If you want to join our team for this summer’s Obliteride, we’d love it!  Emily, Jo and Lysen have once again committed to another year.  Leave a comment on the blog if you’d like to join our team and I will get right back to you.IMG_0481

Weakness splintered through with joy

Standard

IMG_0478With trepidation I packed for yet another trip to Seattle.  This time it wasn’t so much fear of test results.  Allistaire seemed to be doing well and I was hoping labs, an exam and CT would confirm what appeared to be a girl full of life.  Honestly I was afraid to even get on the bike.  Not only had I not even sat on a bike since last year’s Obliteride, I had never sat on a road bike.  I wasn’t sure how I would balance on those nimble tires or have the presence of mind to both figure out how to shift those weird gears planted on the center of the frame below the handle bars and get my legs to push up a hill at the same time.  We had lots of company the end of June and into July and I just didn’t feel I had the time to train.  I mean what would happen if I only had time for a few rides – just enough to make by butt hurt real good but not enough time to get acclimated?  Surely I was stronger than a year ago, right?  I mean, I no longer live every day sustained by the steady stream of Starbucks food and I’ve been regularly hiking a big, lovely hill near our home.  I was swapping out my old mountain bike for my sister-in-law’s old road bike.  It’s all fixed up she told me.  Plus, it has these sweet bright blue pedals that match the bright blue water bottle holders.  Bright blue is well-known to increase speed and stamina.  One year prior, I got on my mountain bike with eye lids still swollen from hard crying the day before.  I didn’t know how I’d make it through those 25 miles, but I knew that the news that Allistaire only had a 5% chance at life and probably less than 6 months spurred me on all the more.  Never was I so determined, so motivated to the core to exert myself for the hope of better options for my beloved.  Cancer research was the only thing that would give Allistaire a shot at survival.  And my whole self tore open with anguished, wailing love for her.  No matter what, I would ride those 25 miles.

It has been one year since that brutal day; that day that lacerated my already tattered, bleeding heart.  I told myself two things.  Someone has to be the 5% – whose to say Allistaire won’t be in that small space of survival?  God, my God, the God who ordains every day of my life before one of them comes to be, this God is in charge of Allistaire’s life.  It is He who will determine how long or short this little girl lives.  Her life is in His hands and no cancer or other threat can overpower the beautiful sovereignty of God.  And so here we are, one year later with her life thriving.  Thus far she has been spared and while God has capacity to use mysterious means to accomplish His will, so too can He use the tangible, the measurable, the concrete.  He chose to use a clinical trial through Fred Hutchinson Cancer Research and the brilliant minds of the doctors there to offer healing from certain death for my daughter.  And I rejoice that even the tangible nature of chemotherapy is still mysterious as is the spectacular immune system.  Right there, within the concrete is incomprehensibleness, is throbbing beauty and glory!  So now I have even more reason to get on my bike and ride.  I have all the more reason to shout my thanks and endure whatever pain and challenge this bike ride might present.  It’s weight negligible like that of a shadow of the real thing.

At last the time came to depart for Seattle.  I got on the bike just long enough to lower the seat to the appropriate height.  I learned how to secure the bikes to our new bike rack and we set out.  It was supposed to be a quick stop to pick up bagels for the road trip ahead.  Somehow, however, a man in a very tiny teal car managed to not see the enormous shape of a Suburban and bike rack laden with 3 bikes, backing right into it.  I was so flabbergasted that I could not even manage to see the mangled front wheel of the bike I was to ride.  Thankfully he was an honest man and stayed to acknowledge his action and provide insurance info.  We sped westward, through smoky summer skies from countless forest fires in the Cascades.  In Olympia, Washington, at last we arrived and were able to get the bikes fixed thanks to the great guys at Joy Ride Bikes who made it happen despite their crammed maintenance schedule.

On Thursday, August 7th, Allistaire had another CT to check the status of the Cryptogenic Organizing Pneumonia (COP) in her lungs.  We then had to head over to SCCA (Seattle Cancer Care Alliance) for a blood draw and appointment with Dr. Carpenter.  I had dreaded this moment where I would have to park the beast of the Suburban, now extended by another nearly 4 feet due to the bike rack, in the cramped SCCA parking garage.  There is a fellow whose name I don’t know, but who almost always works the parking booth.  Over the many months of appointments at SCCA, we have a running joke about his juice he sets just outside his window to keep it cool.  Our connection is clearly not deep but nevertheless joy to have familiarity with this other human, he a lovely Eritrean man.  It only took eye contact for him to wave me into a reserved parking spot, vast in its proportions.  I didn’t even need to speak a word and with a wave of his hand he provided for one of my bright points of anxiety about this trip.  Thank you Lord I repeated.  Thank you for caring for even the smallest detail of my need.

We arrived early in order to get blood drawn in time to have results back by our appointment time.  Allistaire’s face turned red as she began to scream in fear of what was to come.  Solveig looked terrified and wanted to flee the room.  I forced her to stay, to allow the sound of those cries and the look of terror on her sister’s face to enter into her.  How little she knows of her sister’s suffering, how intangible it has been to her.  Here Solveig, expose your heart to the biting pain of your sister’s pain, know in very small part her reality and thus your understanding will expand and your compassion grow and one day when you look back upon these days, perhaps you will see them not only from the perspective of what it cost you, but what it cost your sister, what it cost me, what it has cost us as a family.  I pray then you will know that I would have never left you had I not been forced to.  When you see the closeness I have with Allistaire, I so hope you understand it is because I had to wrap my life around her’s with all the strength I possessed.  She was surrounded, death pursued her and it was all I could do to try to shield her.  Thousands upon thousands of times I looked at her face wondering how many more times I would be able to do so.  I greedily took in the curve of her cheeks and dimple, the color of her blue eyes and I craved yet more of her because I was desperate to not have her ripped from my arms.  I praise God I have never known that sort of threat on your life Solveig, but it has also had the effect that I have not cherished you as you deserve.  My dear love, my first-born, please forgive me and find in your heart release for my loving you differently.  I never intended to.  And I fight now to gain that closeness with you that comes so easily with Allistaire.  I seek to gaze into your beautiful gray hazel eyes and watch the adorable way your lips move over your toothless gap.  I force myself to slow and take in the wonder of who you are, how it is possible that such a creature, so vast and individual and beautifully creative could have actually come from my flesh.  My mind contorts to try to fathom that your eight year old limbs were ever wee enough to have grown inside of me.  I listen to your joy as you finish book after book, consuming stories with the gift of your amazing imagination.  While I have had to focus so long on your sister, you have grown taller and taller and more and more your own person in the world.  I love you dearly Solveig Kailen and I pray the Lord will help me to make that known to you sweet child, that you would go out into this world knowing how very wondrous you are and dear to me.  I have to trust the Lord with this brokenness as much as I must choose to entrust the brokenness of Allistaire’s flesh with Him.

Without even fully entering the exam room, Joan Suver, the amazing P.A. that works with Dr. Carpenter, swept in, pale yellow gown flowing and her voice trilling that the CT looks great.  If results were going to be announced in such form I figured I might as well blurt out my request to know how the labs were.  Great, great, she said.  The CT showed no evidence of COP.  Her white blood cell count 8.32, hematocrit 43, platelets 212, ANC 6,830, and liver functions tests 32 AST and 21 ALT.  “Well she has a few freckles on her face,” I said tentatively, knowing her skin would be scrutinized for GVHD and failure to protect her from the sun.  “Oh, she looks nice and white,” Joan responds.  I sighed relief at good results and the freckles being allowed to only be signs of cuteness, not lack of protectiveness on my part and danger for Allistaire.  Dr. Carpenter later entered with a question. uttered with laughing voice, “Did you have a transplant?”  Allistaire just giggled and rolled around on the crackly paper atop the exam bed.  She mostly obliged with the exam and went through the required maneuvers such as criss-cross-applesauce and my favorite, the namaste pose where both palms meet and elbows flare out perpendicular to the torso.  All these positions check for evidence of skin and joint tightening which can be signs of GVHD.  Once again, it was stated that having had a peripheral stem-cell transplant, Allistaire is at highest risk of chronic GVHD.  “For how long,” I plead.  Apparently she is at risk for up to 3 – 5 years post transplant to still develop GVHD, so no evidence now is no guarantee she is in the clear.  Nevertheless for the time being, she looks remarkable.  So pleased was Dr. Carpenter that the conversation about future appointments was extremely low-key.  He feels no need for her to have another CT to check her lungs unless symptoms show up.  We talked about her next appointment being either around Thanksgiving or New Years – it’s up to us to decide.  So amazed by this release from constant doctor appointments and trips to Seattle was I that I forgot to even ask about blood tests.  When it occurred to me, I tracked him down in the hall.  “Does she still need monthly blood tests?” I asked with eyes wide.  “Oh, no, I don’t think so,” came fast his words.  Then, with head cocked to the side, he tells me just to pick a date to have her labs checked halfway between now and the time he will see her again.

We left the 6th floor and I sort of just floated out, mouth inwardly gaping at our continued good fortune.  We had intended to explore the gift shop for a few minutes at Allistaire’s request; this a well entrenched tradition of ours.  And then there was squealing with glee and I jerked my head to look for the source.  There coming out of the bathroom, were our friends from Bozeman that we met through the Kid’s Support program provided through Cancer Support Community.  I knew they were in Seattle for Megan’s follow-up CT for lymphoma.  I knew that they had been given the incredible gift of clear scans.  What I didn’t know is that Megan was at that moment scheduled for her very last blood draw followed by having her line pulled.  What joy it is to see people from home, people who inhabit both worlds of Bozeman and Cancer.  I had to hold back my hand from rubbing the fine light brown fuzz on top of her gorgeous head.  My cheeks hurt with a smile that would not let down from joy that would not stop.

After a fun day hanging out with Emily, Jo and Lysen and the girls staying with my parents, it was at long last, time to get on with the business of Obliteride.  Emily was giddy with excitement and repeated how great the course was.  With joy she relayed that we would go down Lake Washington’s west side, around the bottom in Renton, out to Issaquah, up to the I-90 bridge, around Mercer Island, across the I-90 floating bridge and back up to Magnuson Park where we began.  Only then did the terror of the actuality of those 50 miles really start to sink in.  I was very, very familiar with these landmarks and knew how long it takes to drive that route, I could not imagine how I would make it all that way on a bike.  Oh, and the course was actually 55 miles rather than 50 I learned – that’s just what they had to do to make the course work.  Oh dear.  Oh dear.  This could be very bad.

On Sunday morning, August 10th, we set out from a friend’s house a few miles from Magnuson park.  This was my chance to get the feel of my bike and figure out how the gear shifters worked.  My dear friends knew my fear and continued to encourage me that they were here to do this with me.  I cannot overstate how indebted I am to Jo, Emily and Lysen for making this ride with me and being an incredible support.  They sacrificed time, money and the fun they could have had to ride by my side, supporting me, our family and  the furthering of cancer research at Fred Hutch.  Such amazing women I can count as dear and close.  We rode the first 14 miles to the first aid station rather uneventfully.  I realized quickly that if I was going to make it to the end, I had to maximize my momentum on the down hills.  At one point I somehow failed to notice the tide of bikers in front of me turning right.  Somehow I missed the police man too as he waved out our direction.  I blasted right through the line of cyclists, narrowly missing the back wheel of one and had to make a fat U-turn, losing all speed as I approached the hill I should have glided up.  I confess I did not delight, as I could have, in the spectacular views of Lake Washington as we rode along.  I was intent on making my legs turn.  At our first stop I did not choose to indulge in the gummy bears and chips and such.  Why would I need those?  After using the port-a-potty, and determining to try to enjoy myself more, we set out.

The path out of the aid station excited immediately up a steep hill.  As I struggled up the incline, I spy Emily crouched down at the top, intent on getting my photo.  “What are you doing that for?” I gasped.  “So you won’t forget this hill,” was the response.  As though I could.  We continued on south along the lake and as we rounded the bottom and headed back north on the east side, I began to feel cramping in my quads.  Lysen generously offered me her water bottle full of electrolytes.  It soon became clear that not only was I not physically prepared for this ride, I was ignorant of what one does to prepare to endure long distance.  I knew nothing of electrolytes and goo and salt and all that stuff that could help get me through.  Not long later I was mystified to feel my quads turning to concrete.  It was such a strange sensation of them absolutely losing their ability to function.  Can you tell I’ve never really had to fight long to get my body to do what I need it to do?  Around the point on the Lake where the enormous Seahawks training facility juts up out of the trees, I sat on the side of the trail while Jo and Lysen massaged my quads with the mysterious glory of BioFreeze and I chugged more electrolytes.  Finally my quads released their rage and we went on.  We agreed that at the next aid station I would tank up on all those essentials laid out for our consumption.  I was slow enough that Lysen and Jo had the time to stop for some much-anticipated blackberry picking.  Jo had rigged up a cup on her handle bars for just such an occasion.

The third aid station was situated just at the top of the first segment of the I-90 bridge on Mercer Island.  There I ate salty chips, gooey gummy bears and even succumbed to a banana, my least favorite food, all in the attempt to pack in all those mysterious elements my body needed to keep my muscles functioning.  I felt good as we departed but was again amazed at how even the slightest incline felt ridiculously more difficult than it seemed it should have.  At times my friends rode on ahead of me to give me more time to anticipate a turn or make use of my speed down a hill.  The view was beautiful as we circled Mercer Island but I soon became very, very ready to get off the island and closer to our finish line.  As we headed up the western side of the island toward the second segment of the bridge, there appeared in my view a long hill, not so very steep, but so very long.  I saw a few others walking their bikes and I determined I would not walk, rather I would take it in the easiest gear; surely that would work.  But as Emily lied, yelling out she saw the top of the hill, I felt that now familiar sensation of my legs cramping up into rock solid forms.  At one point I rode so slowly I was amazed the bike stayed upright.  I could not believe I was riding slower than it seemed I could have walked.  It came to me that I would have to walk the rest of the way up the hill, my quads were about to seize up.  And then as I set my right foot down, it locked up solid.  In an attempt not to fall over, I set my left foot down only to have that leg seize up as well.  I looked helplessly down at my legs unable to remain standing, but utterly incapable of getting myself off the bike to sit down because my legs would absolutely not bend.  I called for Jo and Emily who were close by and somehow I found myself sitting in the hot gravel alongside the road, my legs so tight that the heels of my feet could not even rest on the ground.  I cried out for the BioFreeze, which with blessed speed Emily and Jo began vigorously slathering on my thighs.  Cars and bikers alike stopped to see if we needed help.  I suppose it looked as though I had crashed, so hastily was my bike discarded.  At one point I asked Emily to bend my legs, but the pain was so intense I made her stop.  Eventually the BioFreeze started to take effect and I grabbed each ankle, forcing my legs to at last bend.  Throughout this agonizing few minutes I had the sense of having an out-of-body experience.  I really had never imagined this sort of thing happening.  I mean, I knew the ride would be hard, but I figured with a road bike and being a bit stronger, it would actually turn out better.  I was mortified at how horrifically weak I apparently was and couldn’t help but laugh at how outrageous the whole thing was.  I felt bad for my weakness so impacting the ride that my friends could be having, but I was also so thankful for their generous presence in the face of my absurd incapacity to do what I had determined to do.

We made it to the top of the hill walking.  Emily called ahead to the next aid station to ask them to set aside some BioFreeze for me, as we had used up all of our supply.  She hesitantly told me they also said they could send an aid car.  NO WAY!  No way!  There was absolutely no way I was going to get in an aid car.  Somehow, someway, I was going to finish this thing, even if I had to walk the last 17 miles.  Emily generously offered to let me ride her new amazing bike, thinking it would be easier on me than the old mint green Bianchi.  We didn’t have the tool necessary to lower her seat so we decided we’d switch at the next and last aid station.  As we descended down the hill and onto the floating bridge portion of I-90, I felt my quads ever on the verge of absolute cramping again.  I wanted to turn my face to the glorious wind sweeping off the winds of  Lake Washington to the north, but all I could think is that I needed to get across this bridge and make it to the aid station on other side, at the top of another long hill.  Once I sensed my quads, hamstrings and triceps all in cramping revolt, I got off and walked the rest of the way across the bridge.  Eventually the metal clicking of Jo and Lysen’s clippless shoes joined my slow progress forward.

Turns out there was no BioFreeze left at the aid station, but I forced down more chips and another wretched banana while Emily adjusted the bikes upon which we planned to trade places.  As my contact lenses conspired against me and dried out so I could not see clearly, I tried to both make the most of the speed gained on each hill and not crash Emily’s new bike on some unseen crack or hole in the pavement.  At long last we were back across the University Street bridge and now I knew the streets intimately having lived five years of my life at the University of Washington and then all those months at the hospital and at Ron Don.  It was sweet relief to see a dear and familiar part of the Burke Gilman Trail.  We crossed 41st street, just on the north side of Ron Don.  How strange it was to exist in this same physical spot exactly one year later.  It was from this crossing we set out to Obliteride a year ago.  How many times had I waited for bikers to pass before crossing over this line in the months we fought for Allistaire’s life.  It was surreal.  As we grew closer to Magnuson Park, my emotion, pressed down in order to focus on the physical challenge, now welled up.  As much as I yearned to be done with this ride and off this bike, I yearned more to see Allistaire’s sweet face and hold her tight.  What gift it was.

I had felt so very weak a year prior.  I felt beaten down, crushed.  I thought I was stronger now, but clearly, almost not strong enough to make it to the end.  Were it not for my sweet, patient friends and the grace of God, I would not have made it.  What takes an average of five hours, took me seven.  Part of this journey, a big part really, has been about learning to accept and come to peace with being weak.  Weakness was always something I reviled and fled from.  I would go to great lengths to avoid those things that put my weakness on display, like playing volleyball which might seem insignificant but is just one marker of my desperate need to feel in control, not stupid, not ugly, not weak, not a burden on others, not useless.  I’ve worked hard in my life to excel at what’s in front of me and I have unknowingly worked hard to protect myself from situations where my confidence would be challenged.  In many ways I have been a fool.  In many ways I have just been an average human, weak and made of dust, temporal and flawed.  I have sought to find a foothold here and there to steady my life, to keep my head up, to keep from sinking.  I have tried to pull in towards myself, to gather those identifiers that might buoy me up, that would color my life as worthwhile, as admirable.  In the last two and half years, these footholds have given way.  I have no job, no career, no assets, less beauty, less awareness and intelligence about the happenings in the world.  While some have offered words of what a great mom I am, I know my propensity toward anger and impatience.  I am well aware of my failings.  I look around, wildly at times, searching for those stones upon which to stand, upon which to build my self-worth, my identity.  My panic comes sometimes as anger, sometimes as tears that won’t stop.  As I stand in the circle of beautiful, intelligent, accomplished women at Solveig’s school at pick-up time, I feel grossly inadequate.  And I see Him out of the corner of my eye, and I know exactly what He is saying to me.  He is calling me yet again, to at long last, just rest in Him.  There is no panic in Him as my strongholds are torn down bit by bit.  He is not anxious as He sees me sink down.  He stretches out His hand and calls for me to grab hold, to stake my security in the one and only thing, being actually, that will never give way.  He sees me utterly as I am.  He is not fooled.  He is not enamored by my attempts to look good.  He loves me just because He has chosen to and because mysteriously, miraculously and gloriously, He has made me to bear His likeness.  My identity rests solidly in Him, on the claims He has made about me.

So as I sat on those hard, hot rocks on the side of the road, forced to accept the help of my friends, in a most unflattering way and later as I succumbed to a massage of my weary muscles, glutes included, I gave in to my weakness and received care and kindness.  I am finding strange delight at being at ease with my limits, my finiteness, me neediness, my weakness, my unloveliness.  It still absolutely cuts against the grain of my natural self, but I am discovering the power and weight blown out of my fear.  I am stripped and found weak, and yet I stand.  I stand.  I stand with head held high because He is my foundation.  My Father is my strength.  His power is truly made perfect in my weakness.  It is mystery.  It is beauty, as of another world.  I grasp words to put outline to the view the Lord is showing me.  While Allistaire thrives, I know at any moment the ground could crumble again.  I still struggle with the sin of my anger, at the many ways I tear down Solveig when I should be the first person in her world to build her up.  I have shame over that failing.  I still have no work besides that of a housewife.  I am still unclear on the way ahead.  My life is not all cleaned up and pretty.  It is in many ways ragged.  I often still hit that wall of panic, of the suffocating, drowning sense that this is not how I imagined my life, this is not what I want my life to look like, this is not who I ever wanted to be.  There is so much outside of my finite control and want to scream and cry all at once that I just can’t seem to fix it.  But He is ever there, calling my name, extending His hand, soothing my brow, calling me to rest in Him, to trust Him, to give way to His sovereignty over my children, my husband, my days and my heart.

I want to be the strong one, the one to forge ahead.  I want to be in control of my life.  I want to have the capacity to determine the course of my days.  I would far prefer to be the one to give than the one who must stretch out palms to receive.  This year’s Obliteride was and will be quite memorable, epic even perhaps.  Not in the way in which I would have wanted, but really, in a glorious way that highlighted what needed most to be highlighted.  That we are people frail, at risk for all sorts of brokenness.  My sister’s were the hands and feet of Christ to me, caring for me in my weakness.  And in my weakness, I gave all that I had to give, which was little, but all that was necessary, and even in that there was beauty.  Beauty and grace marked the day.  And thanks, thanks and praise for the bounty that I celebrated having the joy to receive.  It was sweetest, overwhelming joy to hold my little girl tight in my arms, to know it could have been different, so very different.  It is a foreign fragrance, as of another land, to be at rest with weakness as I rest in my God, to be in need and to receive so abundantly.

Thank you to all who gave so generously in my name to Fred Hutchinson Cancer Research Center.  I am indebted to you as I am to those scientists and doctors who tirelessly endeavor to find better ways to put an end to the ravages of cancer.  And if you can believe it, despite it all, the whole experience has made me excited about riding again next year and the next and the next.  I’ve actually started imagining the fun I could have if I had a road bike and got out regularly, barring the snow of course.  I might be able to actually enjoy the scenery next year.

If you’d like to give to further cancer research but fear you’ve missed the deadline, fear not!  The cutoff date to give to Obliteride isn’t until September 30th.  So far, $1.65 million dollars has been raised, but this is $600,000 short of the goal.  So feel free to click HERE to give to Obliteride in my name.  Remember, another way to give to Obliteride is to order a sweet Smack Down Shirt.  Your last chance to get a Smack Down shirt ends this coming Friday, August 29th.

There’s yet another amazing way to give.  My sweet and hard-core brother-in-law Bjorn, is running the Cascade Crest 100 – a 100 mile race today, August 23rd, in the Cascade mountains of Washington.  Yeah, you read that right – one hundred miles.  Part of his motivation to run is to raise financial support for the Ben Towne Foundation which specifically conducts pediatric cancer research in Seattle in collaboration with Seattle Children’s and Fred Hutch.  One hundred percent of all donations to the Ben Towne Foundation go to directly to fund pediatric cancer research.  You can click HERE to go to Bjorn’s fundraising page and give.  You can also watch a short video of Bjorn HERE as he articulates his motivation to run and you can track his progress in the race HERE.

Lastly, following are a whole bunch of fun pictures from our Obliteride weekend.  After that I have included some of the harder pictures from a year ago.  The last picture is of Allistaire just a few days ago, making impressive progress on her salad training.  She actually declared that she loves tomatoes and cucumbers and cheered when she was served up a plate of salad for dinner.  Shock and awe.  And thanks 🙂




IMG_4096IMG_4104IMG_4106 IMG_4115 IMG_4105 IMG_0493 IMG_0370 IMG_0368 IMG_0364 IMG_0489 IMG_0496 IMG_0495 IMG_0494IMG_4154-2IMG_4150-2IMG_0487IMG_4159IMG_4172IMG_4176IMG_4171IMG_4195IMG_4167-2IMG_0486IMG_0485IMG_0467IMG_4210IMG_0479IMG_0482IMG_0480IMG_0474

IMG_0397 IMG_0385 IMG_0475 IMG_0477IMG_0469IMG_2563 IMG_2985 IMG_3102 IMG_3109 IMG_3131 IMG_3142IMG_3383IMG_3880IMG_9586 IMG_9594IMG_0458

SMACK DOWN!

Standard

shirt_bigYes, there was once a wee lass who got cancer. Who’s ever seen a bald kid except on those billboards? But there she was, little but fierce, fighting a foe who nearly took her down. But in swooped some sweet research from that powerhouse, Fred Hutch, who gave her hope for a cure and a chance to fight with the most glorious of weaponry. The battle raged on and on but she emerged – she is alive and thrives.

Do you know a baldy-top? Is there a face you behold in your mind, or in the mirror, whose life has known this fight? Far too many of those dear faces are gone. Far too many are not just touched, but ravaged by this villain, cancer.

Wanna give cancer the SMACK DOWN? Wanna join the fight to put more effective, strategic, targeted weapons in action against cancer? Do you want to obliterate cancer?

 

Buy a SMACK DOWN T-Shirt today!

$20 of every shirt goes straight to Obliteride which is Fred Hutchinson Cancer Research Center’s fundraising bike ride

100% of all funds go straight to cancer research!!!

 

My dear friend Emily, who rode with me in Obliteride last year, along with her husband Dave, have a screen printing business (Media Fly Screen Shop) and are generously crafting these shirts for only the cost of materials and shipping!  That means 100% of the profits from T-Shirt sales go directly to further cancer research at Fred Hutch!  Awesome!!!

Order your shirts by next Tuesday, July 29th and they’ll be on their way to you by August 4th, just in time to rock your support of cancer research on our Obliteride day.  Orders for a second printing will be taken through August 29th for a shipment date of September 2nd. Oh, and by the way, there are kids sizes too and won’t they just look so cute puttin’ the SMACK DOWN on cancer?!!!

ORDER HERE NOW!!!

Get inspired – check out just one example of what Fred Hutch is up to:  “Could this little thing be the next big thing:  Hope for a world where tiny T cells and other immunotherapies eliminate cancer without side effects”

 

Do it for all the baldy-tops we love : past, present and future!IMG_3588