My body moves down the hall, passing the room with two beds.  The window light passes flat across their undisturbed ivory blankets.   I move through this space, the dining table with six chairs, the two couches and two armchairs empty.  Waiting?  I turn on the water and rinse the dish.  I put away the milk.  There is such familiarity in these actions yet I recognize them as foreign.  For the first time in four months, I did not shower. My yoga pants, old green fleece that looks like Astroturf and purple slippers move with me.  Alone, I live in a place meant for more people, for a family.  But mine is scattered.  I have been given a home in which to live and I am thankful, but I feel disoriented.  How do I understand this strange existence – this familiar, so ordinary and yet everything is wrong, this is not how it is supposed to be.

What does one do when the tsunami hits and family members are washed away – you are left alone in an unknown land?  How do you move through your life when the towers fall, with shrapnel and searing silence?  How do you construct the day when one-fourth of you is gone forever?  How?  I wonder.  We find that there are ways in which life is common and familiar – there are still things we know how to do.  Our tongues still form the words of our language and our body knows that with dark we are to sleep.  Our stomachs bend in hunger and we tidy up our space.  But above this plane of the known, we don’t fly, we hover.  We are suspended, not knowing exactly what to do with ourselves, our true selves.  For who are we now?  We are not what we were – circumstances have so clearly and utterly altered what was.  We want to reject this change, this sweeping in and robbing, this graffetiest that warps and mars the picture.  There is silence where there should be interrupting sound.  There is spaciousness where there should be crowding and bodies moving past one another.  We are still that person living in that world, and we are not.  We do not yet know, or yet see, who we will become.  We are left adrift in this time between times.  How do we now define ourselves when the gripping-on-places have been stripped back  – gone.  How do we invite in change that will form beauty and have the wisdom, or perhaps it is strength, to not be poisoned by the rot of loss.  Do we dare embrace that which has cut us, deep black wound? Dare we?

Perhaps the hardest part is knowing there is no going back.  There is no way to undo.  Yes, one can move forward, but never back.  Life has changed permanently.  This is not some blip, but it is now defining – it’s reality pushes into every last action.  Nothing is disconnected from this changed reality. Yes, I wash my dish and that is ordinary, but I wash in a sink not my own.  I look out the window to a foreign view.

We look to take ground.  Here in this new strange place, we seek to conquer, to plant and watch for signs of new life.  What’s lost is lost, there is no regaining it and so, here we are.  What shall we do?  Should we not purpose to see what IS before us – should we not survey this land?  We have landed here against our will.  But there is still bounty to be had.  There is ever resilience of life calling out to us – declaring the sometimes offensive truth that there can be new beauty and life, growing from the loss…

On Saturday evening, I was informed that there was a transplant apartment at Ronald McDonald house, ready for us to move into.  Knowing that there were over 30 families on the waiting list to get a room, Sten and I moved quickly to move everything out and clean the old room.  We’ve been on the other side of that and know what it is to need a place to stay right away.  We took care as we cleaned the floors and bathroom and dusted the shelves, imagining it was our own family waiting for the call that there was at last a room available.  And so as Sten went back to the hospital and cared for Allistaire, I got settled into this new 2-bedroom apartment.  I arranged the recently purchased fake plants (no real plants for a year post transplant) and the picture frames and made the bed with my own sheets so that it would feel a bit more like – well, I was going to say like “home,” but perhaps it is more accurate to say, like “a home.”  I felt relief that I gotten everything done – just in time, I thought, to get back into the hospital.  But then I got sick.  Then I felt adrift.

While I have been alone in a place meant for more, Allistaire has been having a rough time.  Her Diladid pain-med drip has continued to increase and is now 6 times higher than the original dose.  Thankfully this seems to have finally met her pain level and she is overall more comfortable as far as pain goes.  However, she does now have mucositis in both her tummy and her throat and mouth.  She keeps this little crescent shaped mauve bowl nearby to spit up mucus.  She uses a small cloth like a burp rag to wipe her chin from the constant strange drool.  In addition, she has been retaining fluid which is another common challenge at this point in transplant and is likely the capillary leak caused by the Clofarabine and/or the mucositis itself.  Allistaire’s weight is typically right around 15 kg but jumped up to 16.5 kg.  This is not because of a calorie increase.  She has not put almost any food or drink in her mouth in over a week.  She is being supplemented with IV nutrition and lipids.  This means the additional weight is fluid retention.  Her little eyelids are puffy and her cheeks are huge.  So they give her Lasix which is a diuretic.  She pees like crazy and can lose a kilogram in short order.  Because she is continuing to need blood transfusions (yesterday she got both blood and platelets), they always “chase” the transfusions with Lasix because of the fluid increase resulting from additional blood in her system.  This fluid retention, along with side-effects from some of her meds, is another factor in her high blood pressure.  Because she is unable to take any meds by mouth at this point, they switched out her by-mouth Enalapril, for a higher dose of the Hydralazine.  The BMT doctors consulted with the Nephrology (Kidney) doctors who said that they could definitely increase the dose of Hydralazine from where it had been and this should better control her blood pressures, which it seems to be doing.

While Allistaire basically does nothing but lay in bed and even mostly refuses to talk due to pain in her mouth, she is actually doing relatively well considering where she is at in this process.  Thankfully, her LFTs (liver function tests) continue to improve, and her bilirubin count, is completely normal.  All of this means that while her liver is still processing junk from the chemo, it is essentially healthy.  And to use the words of the doctors yesterday, “her kidney’s are pristine!”  Thank you God!  And to add joy to joy – Allistaire has blood counts today for the very first time since they were wiped out with chemo!  Her ANC was a whopping 39 today!  She also has some lymphocytes and monocytes!!!!!  Today she has her last dose of methotrexate, which might take them down again, but the point is – those donor cells are there in the marrow – doing the miraculous!  Who can believe that some 37-year-old ladies european cells are growing in my child’s bones!!!! Wahoooo!  It is the beginning of recovery.  She will not considered to be fully engrafted until she has had an ANC of 500 for two consecutive days, but it has begun.  New life is taking root in our girl.

It has been a strange week.  I got sick on Monday morning and was thus unable to even come on the Unit, much less be with Allistaire until Friday morning.  During that time, Sten cancelled his original flight back to Bozeman and stayed with Allistaire in the hospital.  I know this was a good time for the two of them to be together, but it is was hard to stay away and hard to see how dramatic the change has been in Allistaire in just five days.  It is so sad seeing her just lay there, so uncomfortable and her face distorted by fluid.  She just isn’t herself.  The other day I remembered when we took Solveig camping at Wenatchee State Park when she was 3 – such different lives.  Makes me sad.  It draws me into grief, but I ever have to stop myself and put this time into perspective.  We could be home.  She could be having hospice nurses attending to her. Instead she is here on this 125th consecutive day in the hospital.  She’s been given one more chance to beat this thing. And today new life has begun.  Now we will need to be on the alert for signs of GVHD (Graft Versus Host Disease), where the new cells/immune system will likely recognize her body as foreign and start to attack.  Acute GVHD shows up typically in the skin, the gut and the liver.

*By the way – whoever gave Allistaire the little Hello Kitty purse with the lip glosses – thank you!  Your name got disconnected from this gift but let’s just say, other than Doggie, nothing brings her more joy!

The pictures below include a fun visit from an old friend of mine, Betty Price, and Solveig with her cousin, Lucia, camping over near Port Orchard.

So the transplant happened right?  So what do we do now?  We wait.  We wait for those 150 million stem cells to meander their way into the labyrinth of Allistaire’s bone marrow.  How that happens I really don’t know.  I looked it up and this is what I read:

“Migration of hematopoietic stem cells through the blood, across the endothelial vasculature to different organs and to their bone marrow (BM) niches, requires active navigation, a process termed homing. Homing is a rapid process and is the first and essential step in clinical stem cell transplantation…Homing is thought to be a coordinated, multistep process, which involves signaling by stromal-derived factor 1 (SDF-1) and stem cell factor (SCF), activation of lymphocyte function–associated antigen 1 (LFA-1), very late antigen 4/5 (VLA-4/5) and CD44, cytoskeleton rearrangement, membrane type 1 (MT1)–matrix metalloproteinase (MMP) activation and secretion of MMP2/9. Rolling and firm adhesion of progenitors to endothelial cells in small marrow sinusoids under blood flow is followed by trans-endothelial migration across the physical endothelium/extracellular matrix (ECM) barrier. Stem cells finalize their homing uniquely, by selective access and anchorage to their specialized niches in the extravascular space of the endosteum region and in periarterial sites.”  Blood, Sept. 15, 2005, Vol. 106 No. 6

Always good to have your brain strained and your imagination invigorated right?!  So the basic idea/hope is that the conditioning chemo napalmed Allistaire’s cancerous bone marrow into oblivion and that now, desolate ground awaits a new resident – a new life-giving goo to reside in the niches.  But while we await engraftment, which should take place around day +14, Allistaire is without all that one’s bone marrow normally supplies: red blood cells to escort oxygen around the body, platelets to keep the blood where it needs to be and all those fancy, amazing white blood cells that fight the evil doing bacteria, viruses and fungus that seeks entry.  In the meantime, she has transfusions of red blood cells and platelets once she meets her transfusion thresholds.  They transfuse red blood when her hematocrit reaches 25 and platelets at 10.  So far she has had a transfusion of each.  Perhaps now is a good time to remind you to get out and give blood if you haven’t already done so.  You say you love us, you say you love Allistaire – well, she needs blood, she and whole bunch of other kids fighting cancer can’t keep fighting without blood transfusions to keep them going.  Stop complaining about needles.  Buck up and go donate.

The other two major components of this waiting game are continuing to protect her organs and continuing to protect her from infection.  Daily blood tests monitor the levels of all sorts of things that indicate how her organs are fairing in all of this.  They can add, change or adjust the dose of various medications to ease up on a particular organ or provide it with greater protection.  Between the daily rounds of the doctors and the every four-hour set of vitals, Allistaire is having her lungs and heart checked out regularly.  We examine her skin and her bottom when diaper changes occur and we shine lights in her mouth, push on her tummy, listen to her breath, count her breaths and heart rate and on and on.  So far she is doing great over all.  The biggest issue has been that her blood pressures continue to be high.  She is already on Enalapril, which is primarily used to protect her cardiac function but also has the effect of lowering blood pressures.  However, this has not been enough so the dose has been increased twice now and they have also used Hydralazine as needed.  The Hydralazine does not seem to have been very effective either so the most recent drug we’re hoping will work to bring the pressures down is Labetalol.  The nurses also noticed increased heart rates and respirations a few times, even while she was asleep.  The doctors decided this morning to have a chest x-ray done just to look to see if there are any indications of infections or problems with her lungs.  Fortunately, everything looked really good.  I am told that high blood pressures are extremely common at this point in the transplant process and they are most likely caused by the Tacrolimus (which I’ll get to in a moment).  Increased heart rates and respirations (breaths taken per minute) may be due to pain.

Thankfully Allistaire remains clear of infections as far as we know.  She has not had any fevers and while some suspicious poopy diapers yielded an initial positive test result for C-diff (a nasty bacteria that makes you poop a whole lot), the PCR test, which counts the number of copies of the virus, came back negative.  The second test is more reliable and sensitive.  Thankfully despite a number of poopy diapers, the skin on her little bottom hasn’t broken down which is a huge blessing and protection against infection.  So far there has also been no indication of sores in her mouth, despite the fact that she has not been willing to eat or drink almost anything for the last four to five days.  It seems more likely that her refusal to eat is a result of mucositis in her gut.  She has been in a fair amount of pain and had been having a lot of nausea.  Starting about a day after transplant, she started throwing up about 4-5 times a day.  Her anti-nausea meds were increased by giving Zofran as often as is possible which is every 6 hours and then adding the combination of Benadryl and Reglan, also every 6 hours.  This means that every 3 hours she has anti-nausea medicine which has been incredibly successful in helping her not throw up.  Since we started this regimen, she has only thrown up once.  The mucositis also creates a lot of pain in her tummy.  She will either hold her Piglet stuffed animal up to her tummy, or more commonly, curl up her knees to her chest with her face down to the bed.  We dropped using the Oxycodone, because as soon as it would hit her empty stomach she would throw it up.  She was started on a Dilaudid drip for the pain.  They start the dose extremely low and then give boluses as needed.  Because she has continued to need quite a number of boluses, her dose has been increased nearly every day.  There is a separate Pain Team that comes by to talk with us and determine what Allistaire needs.  With increased pain meds comes the increased risk of constipation and also suppressed respiration.  Whenever Allistaire is asleep now, she wears a Pulse Oximeter to determine “saturation of hemoglobin.”  It looks like a little band-aid on her big toe with a glowing red light.  She used to fight these big time but has settled down and accepted its presence.

The last major component of this waiting period is the necessity of immunosuppression.  Even before Allistaire received her transfusion of new donor stem cells, she began receiving an infusion of Tacrolimus.  Tacrolimus is given at a very low continuous dose 24 hours a day for weeks intravenously and eventually will continue to be given orally.  The purpose of Tacrolimus is to suppress the aggressive action of her new immune system.  Even though her new cells have not begun making their own blood cells, the infusion itself came with a whole lot of the donor’s T-cells.  This means that from the moment the donor cells entered Allistaire, they could start fighting her body.  This phenomenon is known as GVHD or Graft Versus Host Disease.  Right now the major goal is to provide time for the new cells to engraft.  Acute GVHD will more than likely occur around day 30 and onward.  In the long run, Allistaire might also struggle with chronic GVHD.  Dealing with GVHD is a science all its own.  But we’re not there yet.  Right now we are just wanting to protect her against those T-cells that came as part of the donor cells.  On a crazy side note, I just read that Tacrolimus “is a 23-membered macrolide lactone discovered in 1984 from the fermentation broth of a Japanese soil sample that contained the bacteria Streptomyces tsukuaensis.”  Is it just me, or does it seem a bit incredible that someone fermented a broth of soil from Japan and somehow discovered that it interrupted the action of T-cells?  How seriously awesome!  So when I was 9 years old, I just had no idea that someone was fiddling around with Japanese dirt which would one day be used to protect the life of my child!  Imagine what is happening this very moment in some far off location on the planet that decades later might benefit you or the one you love!  Let’s pray for the circumstances and brains of people who bring about such discoveries.  Lastly, Methotrexate is also being used as an immunosuppressant.  You may remember that Allistaire was given Methotrexate along with Decitabine in her last chemo regimen.  In this scenario, Methotrexate, a form of chemotherapy, is being given at extremely low doses on days +1, 3, 6 and 11 to also help prevent or reduce GVHD.

Lots of drugs.  Lots of little details to attend to and look for.  Lots of time waiting for the mysterious to occur.  Allistaire has had almost all of her by-mouth meds moved to IV which has resulted in the great and mighty two-pronged, six IV pump tower.  There are times when all six pumps are going at once with screens bright and active and flashing.  I thought this would result in much more horrific sleep with the significantly increased potential for alarming pumps, but thankfully so far the nurses have been amazing about being on top of it all.  Usually I am very involved in collaborating with the nurses to schedule out all that Allistaire needs in the most optimal way.  Now I leave all the meds to them because at least one or two things are always going.  I just do my part of being attuned to the little lass and the few other duties like diaper changes,getting weighed, and helping with dressing changes and vitals.  Our days are oddly full and yet slow for the most part.  Sten asked how I was feeling now that the transplant has happened.  Relieved.  The massive push to get to transplant has resulted in what we hoped and prayed for.  On day +28, Allistaire will have her bone marrow probed once again to find out how much is donor marrow and how much is still her own cancerous marrow. Hopefully her own marrow will be nowhere to be seen.  For now that seems far off and we dwell in this lull, this calm.  We know that every day with Allistaire is really a day that might not have been.  We should be home right now.  We should be getting acquainted with hospice, rather, we are on our 119th day in the hospital with the gift of having more days to fight, to preserver, to live.

Sten and Solveig flew into Seattle on Friday evening.  The girls had a great time of laughing and being super-dooper silly.  There is literally nothing better in the world than hearing those two sisters delight in being together.  The laughs that came out of Allistaire were spectacular.  Sadly, they only had that one evening together instead of the four days we were planning.  Solveig and I spent Friday night at Ron Don and I awoke multiple times to hearing Solveig cough and moan a bit in her sleep.  I slept nervously and with such great sadness.  I already knew what had to happen.  The morning was bright and beautiful and  brought with it a stuffy nose.  I knew Solveig was sick and would not be allowed on the Unit, much less in Allistaire’s room.  She wouldn’t even be able to say goodbye.  All the time I had so hoped to have with her was taken away.  Thankfully my brother and sister-in-law were able to take her early – they have a camping trip planned for later in the week.  Such a bummer for Allistaire and I though.  I pray that in those few short hours Solveig did not pass her sickness onto Allistaire.

So here we are, five days down.

The air was alive with anticipation, growing every hour as we approached 3pm.  My sister-in-law, Jo, and I busied ourselves with snacking and putting together some tasty food and festive decor for the staff break room.  At one point we were lugging bags of food down the long white hall toward the unit, when around the corner walked a woman holding a small white cooler with a red lid.  The lanyard and badge around her neck were not familiar.  She walked with purpose and wore a sweater somewhere between mint and aqua.  “Are you from SCCA?” I asked.  “Yes,” she said.  “Do you have cells in there?” I asked, motioning to the cooler.  “Yes,”she said.  “Are those for Allistaire?” I asked.  With almost no expression, she answered, “I can’t tell you that.”  Undaunted, I said, “Well, if they are, that’s my girl.”  With a crazy fat smile and tears down my face, Jo and I walked behind her determined steps, eyes fixed on cooler and mint in the periphery.

We stood back and watched as she opened the cooler and the soft white and pale blue wrap.  We watched as she laid the bag of cells on the counter – the shockingly small little bag – not quite the color of platelets, not quite the color of blood – Rose.  One hundred and thirty millilitres.  That’s it?  All that fuss for this?  This wee bag with some thin liquid, so carefully tested and then gathered, then flown from around the world, the volume reduced to the allowable amount – a mere 10 million cells per kilogram, equating to about 150 million cells; 150 million stem cells so precisely matched to Allistaire Kieron Anderson.  I did not know if I could believe it until they showed up.  It all worked out?  Every single step, orchestrated by a surprising number of people, and every single step occurred bringing us here to this day.  She did it!  That woman, followed through with her promise!

Now the last step was being taken.  The line from Allistaire was being connected to the bag.  How many times have I watched her line being connected to a bag or a vial labeled with a hazardous drug sticker of garish color?  How many times have I had to put my hope in death?  How many times have we prayed that the destruction caused by chemo would be the end of this disease?    How thoroughly lovely to put hope for life in life!  How bizarrely and mysteriously wonderous is the fact that these wee cells will enter Allistaire’s blood stream and make their way throughout her body, pushed along by the power of her pumping heart, and yet compelled by some inner workings to “migrate,” to her bone marrow.  How in the world do they know where to go?  How in the world do these like cells diversify and become all of the many different types of blood cells Allistaire needs to sustain her life?  Oh the delightful thrill of pondering these spectacular processes.  I revel in the complexities – I gorge on their splendor!

Allistaire herself was oblivious to the immensity of the day.  She knew only that it was her special day and that she would be receiving her most special medicine.  The day began of course with a viewing of the movie, WALL-E, with intermittent wide openings of her mouth like a baby bird.  I responded with spoonful after spoonful of peach yogurt and periodic offerings of whole milk as she sat in her little blue cube chair – the one meant to help prevent ankle drop from too much time lying in bed.  As we neared the end of the container, Allistaire gripped her tummy and threw everything up, with tears and fear in her eyes.  We got her settled and I headed off to put doggie and jammies in the washer.  This provided a great opportunity to get suitably dressed for the occasion in a fabulous bright yellow shirt, complete with ruffley, puffy short sleeves, the sort in which Anne of Green Gables would take pride.  Allistaire requested her purse with her favorite lip gloss and quickly noticed that her purple lip gloss matched the picture of purple lip gloss on her shirt.  Throughout the day various happy gifts were opened and Allistaire was allowed to skip her nap and do whatever she asked.

The actual infusion of her new stem cells was quite uneventful with the exception of numerous taking of vitals.  One thing that has occurred more frequently over the last few days, is that Allistaire has had higher blood pressures.  There are a number of possible reasons for this, mostly related to the medications she is on, but this necessitated a medication to bring it down a bit.  The doctor does not ideally want it to be over 120/75.  She required another dose of medication to lower her pressures over night.

As one might imagine, I have had ample opportunity to give thought to this whole bone marrow transplant  deal.  There has been a lot to learn regarding the science of it all, which has been so fun and fascinating.  Yet beyond the science, is the unmistakable likeness of this transplant to the gospel – the good news of God.  There has been dwelling in the core of Allistaire, a sickness that would without a doubt, bring about her death.  The only way to give her hope of life has been to first bring death.  How seemingly illogical.  How can death bring life?  Mysteriously, calculated death is necessary to bring death of the destroyer.  Her cancer cells had to be destroyed.  You cannot put in the new stem cells without first killing off, with the strongest of poisons, her cancer, her disease.  And yet, death of the cancer cells is not enough.  No, death is not enough.  Death has been necessary, but it must be followed with rescue.  Without new stem cells, Allistaire would still most certainly die.  And not any stems cells would do!  No, the world had to be searched and tested for just the right match.  I could not offer my stem cells to Allistaire, because they would not be the right match.  And how simply amazing and beautiful is it that there is one who was willing to give her own life blood to save Allistaire – not because of anything Allistaire has done to deserve this gift, simply because this woman has what Allistaire needed and was willing to give it!  And Allistaire received it, she took it into herself, and it is even now working in her, her promise of rescue, of life!

Like Allistaire, we too have brokenness, disease, dwelling in our core that will be the death of us.  Our beings have been infiltrated with sin – that rebellion against God, that asserts ourselves above all.  Our rebellion, our sin, cuts us off from relationship with God, and without rescue we will die, we will be forever cut off.  But as with Allistaire, death is the first necessary step to bring life.  How revolting.  Ugh – we spit the idea out of our minds.  Who wants to invite in death?  Like leukemia, can we really believe that we have disease in us that will kill us?  But it will, and we actually can put our hope in death, calculated death – precise, targeted death.  The death of Jesus Christ is the death that is offered us.  God says that the “wages of sin, is death,” and so, in His great love for us, He provided Himself, in the flesh, as the necessary death.  Christ came to die, in our place.  In the death of Jesus on the cross, sin and death were put to death and conquered, and in that moment, bright singing hope burst into the world.

But, death is not enough.  We need a life to come in where death once reigned.  And not any life, but a very specific life, a perfect, flawless life.  God says that if we are bound to Christ in His death, we will be bound to Him in His resurrection, in His defeat over sin and death.  In Christ, He is offering us eternal, abundant life – a life bound to Him.  He is our life blood!  Allistaire did nothing to earn her new stem cells; the only thing that qualified her was her need.  There is not one thing we can do to earn our rescue, our salvation.  Our only qualification is our neediness and our willingness to accept – to invite in the death God offers in Christ to put to death our sin and to then receive His life – a life that is eternal and abundant and glorious and singing and resplendent.  We are offered a life that can never again die!

I thank my sweet Father above for this incredible gift of Allistaire’s opportunity to have a transplant and the stem cells to rescue her.  I do not know if this transplant will be enough to save Allistaire’s physical life.  I have no guarantee of the days ahead.  But my hope is not ultimately in this earthly, temporal life.  For Allistaire and for myself, my hope is ultimately in the life to come – a life without pain or tears, without sickness or death – a life bound to the throbbing heart of the living God!  And I do have a guarantee of that life – it is not only a promise in word.  God has left me with a deposit, guaranteeing His outlandish promises.  We, children of God, are left with the Holy Spirit, the very essence of God, to dwell with us in this body and this earthly life until we are joined with Christ in the new heavens and the new earth for eternity!  Wild!  Simply wondrous!

“We were therefore buried with him through baptism into death in order that, just as Christ was raised from the dead through the glory of the Father, we too may live a new life.  For if we have been united with him in a death like his, we will certainly also be united with him in a resurrection like his.  For we know that our old self was crucified with him so that the body ruled by sin might be done away with, that we should no longer be slaves to sin—because anyone who has died has been set free from sin.  Now if we died with Christ, we believe that we will also live with him.  For we know that since Christ was raised from the dead, he cannot die again; death no longer has mastery over him.   The death he died, he died to sin once for all; but the life he lives, he lives to God.”  Romans 6:4-10

I wonder how many times I will sit in this Starbucks with tears streaming down my face.  This morning they flowed down and I could not help but raise my arms – I lift them, lift them up to The Lord – my Father in Heaven who holds ALL things in His hands!  He pains me with His glory – it is TOO much – TOO much!  Who are you God that you are so good?  So kind?  So generous?  Like the weight of searing sorrow, this joy, this wonder, it exceeds the limits of my flesh.  I, such a finite one, bump up against the bulk of the eternal God !  My face cannot contain this smile!

Come what may, this day is a day I feared would never, ever come.  I look back over the past four months of failed chemo after failed chemo and RSV and cancer popping up new place after new place.  I think of my sweet girl who went from frolicking to not being able to stand, much less walk.  Who is this girl?  Well, today she is a little girl full of spunk and joy and life and vigor and furrowed brow and enticingly adorable.  She now invites staff to come in and play with her, to watch a movie or just sit with her.  Today she has made it through hard-core chemo and awaits an incredible gift.  Today is a day of incomprehensible hope – a hope that seemed impossible not so very long ago.  Doors swinging open and open and open – the hand of God effortlessly pushing them aside.

How many times has my Father extended His arm out over the waters and invited me to walk – to step out on shifting waters, to look Him in the eye and trust Him, to put one foot in front of the other and put all my hope in Him?  How many days have the winds buffeted and the sky seemed angry and black?  Today, the sky is bright baby, new hope, spectacular blue.  He has brought us safe thus far.  Come what may, He has brought us to THIS DAY! Today’s circumstances are no promise of tomorrow’s circumstances – yet – today’s beautiful power and faithfulness ARE promises of tomorrow’s beautiful power and faithfulness.  Oh how I long to have these truths so embedded in every fiber of my flesh that all my days would be lived with as much joy and hope and rest as I know this day.  But He is so faithful to teach me again and again – to amass more days and situations and stories of how He came through  – how at His core He is Savior – He sweeps up the broken, the dead, the lost.  He sweeps me up into Himself!  Beware, He is on the hunt for you too!

Yesterday a woman on the other side of this spectacular planet, fulfilled her promise – she acted on the committment she made.  She gave.  She let her blood flow out.  For hours it was drained out of her.  I don’t know your name but – oh, thank you, thank you.  I was told only that you are a 37-year-old female from Europe.  When I heard those words my jaw dropped – “I am a 37-year-old female,” I thought!  In the same small span of time that God made me, He made another little baby girl on the other side of the earth, and one day it would come to pass that she would be prompted to sign up to donate her bone marrow.  Why?  I know nothing of her story, but she made a choice to be ready to give.  And then one day she was called upon to give – and she said, “Yes,” again!  And while I slept, her cells, her life blood, her CD34 stem cells, flew over the north pole and are due to land in Seattle at 11:15am this morning!

Transplant is projected to be around 3 this afternoon!!!!!!  It’s Day Zero – a beautiful day – THE day The Lord has made!!!!

(By the way all picture credit on this post goes to my super skilled sister-in-law, Jo! – thanks!)

Allistaire has only two more doses of chemo to complete conditioning for transplant.  She has done great so far and has only thrown up once and that was actually before her first dose of chemo on Wednesday morning.  The biggest change has been that her eating and drinking has been on a serious decline, which is totally to be expected.  While she hasn’t thrown up, she does seem to have a fair amount of nausea.  There are times when she seems pretty agitated and can’t verbally express where she is hurting.  It’s unclear if this is a result of being nauseous or it could be from her steroid, or even the Clofarabine which can cause anxiety.  The one thing she does continue to get down well, are all of her meds.  She takes 6 – 8 meds at one time two, twice daily, with a number of others scattered throughout the day.  Overall, though she is doing well and though much more tired, continues to have great mobility.  Sara, the physical therapist, came by on Thursday and made Allistaire’s day.  She hid wind up toys around the room for Allistaire to find.  This activity necessitated walking and squatting down.  They also blew bubbles which Allistaire absolutely delighted in!  Sara says that she looks great and is right on target for her age.  Allistaire has also grown to love, Ashlie, our social worker.  She is now in the habit of asking Ashlie about her meetings and if she will come play with her when she’s done.  This of course makes Ashlie giddy.  On top of our joy for Allistaire, is the joy of those who have known Allistaire at various points in her treatment, dating all the way back to the beginning in December 2011.  It has been so wonderful to have a number of folks stop by to see Allistaire and to mark this tremendous milestone.  Many have remarked at how amazing she looks and how her demeanor is so much improved since she first came back in February.  It is a gift to have so many rooting for your child.

While Allistaire has been downing chemo, Sten and Solveig have had the wonderful opportunity to attend family camp with the Cancer Support Community of Montana.  They have been up near Kalispell, Montana on beautiful Flathead Lake.  Solveig has gone swimming, completed a ropes course and gone horse back riding.  She’s also made some new friends that she’s excited about.  It sounds like they’ve had a great time and Sten has also really enjoyed getting to know other folks whose lives have been marked by cancer.  They head home Sunday afternoon, and then we’re hoping they’ll be able to head out here next Friday, June 21st.

For me, today has been spent at a funeral and a memorial, both for little boys who have died of AML.  The first was that of a little one that just passed away last Sunday evening.  His family’s grief is fresh and I pray the Spirit of Christ would bring rest to their hearts.  The other was for our little friend, Jaxon.  It was a time of celebration for his vibrant life.  It was also a wonderful time of seeing so many faces of people I love so much.  It was a reunion of sorts.  I am so very thankful for these beloveds in my life.  It takes only seeing their face to know that you are known, that your life makes sense to them, and they are known to you.  I never knew this hard time with Allistaire would yield such precious relationships.

On a final note…Allistaire is required to have cotton balls in her diaper so that the nurse or CNA can use the little litmus strips to test for a variety of things.  Each diaper change I put on some diaper cream and then stick two little cotton balls on, producing a short snowman effect.  On a number of hilarious occasions, Allistaire has exclaimed, “you can’t use those, I need those for my cotton ball house.”  Now, I had never before heard, much less said, a word about a cotton ball house.  I don’t even really know what a cotton ball house is, but Allistaire was emphatic that the cotton balls belonged to her because she was going to make a cotton ball house.  So, what are you going to do?  I bought some Elmer’s glue, gave her a paper plate and the bag of cotton balls, and well, now there is a pile of gooey cotton balls that apparently is a house.  It brought Allistaire a good 30 plus minutes of joy.  And I’m still deriving joy from it.

There are no festive decorations, no plates of cookies or happy parties to attend.  And yet, there is anticipation.  There is glee and excitement.  I whistle down the corridor.  I cannot stop smiling.  We have at long last arrived at the eve of transplant.  The truth is that eleven days ago, I did not know if Allistaire would make it to this day.  Her cancer seemed to be popping up in a new place everyday.  At so many points, it felt like everything could just come crashing down.  Yet, the Lord has opened door after door, and here we are.  There continue to be zero blasts and everyday she seems more her vigorous little self.  Today marked the last day of radiation and the radiology oncologist remarked how amazing the transformation has been since she first began radiation.  So while her lymph node has certainly responded to radiation and is now down to nearly the size of a pea, her greatly improved demeanor and mobility cannot be credited to radiation.  Could it be that the chemo, Decitabine, that was really just a stand in until conditioning chemo, really had a significant effect?  What I know is that my girl walks again and chats and makes silly eyes and sings and engages staff in her antics and is a joy.  I know that the blasts in her marrow are down from 76% to 51% in 16 days and her peripheral blasts are at zero.

Tomorrow conditioning begins, and while conditioning is not the showy, grandiose part of transplant, it is absolutely as essential.  I always scoff at the word, “conditioning.”  It sounds so gentle and kind.  I think of the conditioner for my hair and its long list of healthy ingredients meant to nourish.  No, this is an altogether different sort of conditioning.  We have at hand a situation in which there is something dwelling inside Allistaire that will most certainly be the death of her if it is not destroyed.  It is a formidable foe and requires obliteration.  The goal of the two chemos Allistaire will receive is to utterly wipe out her bone marrow.  The toxicity of the chemo is so great that her marrow would never recover on its own, hence the need for donor marrow to come in for the rescue.

My goal at the moment, is to give a few basics regarding the timing of things with this whole transplant process, and to give specific drug info in terms of the purpose or each drug and if there are major side effects of long-term consequence warranting mention.  Because a bone marrow transplant is an actual process rather than one event, it is defined in large part, by a time line.   At the center of the time line is the actual day of transplant, where the donor cells are given in an infusion to Allistaire.  This day is known as, “Day Zero.”  Anything that precedes the actual transfusion of the donor cells, or Day Zero, is counted backwards.  This means that tomorrow, June 12, 2013, is referred to as, “Day -6.”  On days -6 through -1, she will receive her conditioning chemos, which is the focus of this post.

On Wednesday, June 12th, Day -6, Allistaire will begin conditioning with one of two main drugs.  The primary drug is the study drug in the clinical trial, Clofarabine, which will be given in a one-hour infusion sometime in the afternoon.  Because people sometimes have allergic reactions to Clofarabine, Allistaire will be pre-treated with the steroid, Dethamethasone, each of the five days prior to receiving her Clofarabine. The Dethamethasone acts as an immunosuppressant to prevent her body from creating an allergic response to the Clofarabine.  Of course there are with Clofarabine, all of the ordinary possible side effects of chemo such as headache, nausea, fatigue etc.  The more concerning possible side effects, which occur in less than 10% of patients, are, “seizures, irregular heart beat, fluid around the heart, multi-organ failure, death, inflammation of the pancreas, and capillary leak syndrome, where the small blood vessels fail to contain blood plasma, which then leaks into tissue, causing sudden blood pressure drops and possible fatal complications.”

On Day -5, from 6am through 9am, Allistaire will have an infusion of the chemo, Busulfan.  Her blood will be drawn just prior to the infusion and directly afterward, and a few additional times during the day, in order to check the level of concentration of Busulfan in her blood.  The doctors know the concentration they are aiming for, therefore, the blood tests will enable them to either increase or decrease the dose the next day to better achieve the goal level.  If for some reason the first dose was under the goal, they would not simply increase the next day’s dose to meet the goal, rather they would overshoot the goal in order that the average over all days of receiving Busulfan, would meet the goal.  Busulfan carries a risk of seizures and so on days -6 through day zero, she will also be given the anti-seizure medication, Keppra.  It seems with Busulfan, the primary risk is that of seizures which is greatly mitigated by the anti-seizure medication.  However, with both Clofarbine and Busulfan, the mucus lining of the digestive tract, from the mouth all the way down, is greatly destroyed, which often results in very painful sores.  Sores in the mouth often make it too painful for patients to eat and so they will be given TPN which is basically liquid nutrients given intravenously.  Additionally, because both chemos will be destroying Allistaire’s bone marrow, they will be utterly destroying her immune system, completely decimating her blood counts and putting her at risk for infection like never before.

While Clofarabine alone is given on the first day, each subsequent day, both Clofarbine and Busulfan will be given for a total of five days of conditioning.  On Monday, June 17th, Sten and I will have been married for twelve years and one day, and Allistaire will be given on this Day -1, a “day of rest.”  This Day of Rest is essentially a day for the chemos to wash out of her system prior to receiving her new cells.  On Day Zero, Tuesday, June 18th, a woman on the other side of the earth will have her blood drawn out of her for hours and her stem cells will be collected.  They will then be flown, on ice, to Seattle/Tacoma airport.  The cells will then be taken to Seattle Cancer Care Alliance where tests will be done to confirm they are the correct cells and to possibly reduce the volume of cells in accordance with the protocol guidelines.  At long last, the cells will be transported to Seattle Children’s Hospital and then infused into Allistaire, much like a blood transfusion.  Because the donor cells are coming from Europe and because they will likely have to be reduced, it is very possible that Allistaire will not actually get her cells until the wee morning hours of Wednesday, June 19th, in which case she will actually have two Day Zeros.

So it’s now past midnight and I know that I will be having to get up with Allistaire at 2am to help her take her medication, Allopurinol, which helps counteract the effects of tumor lysis.  I love the idea of tumor lysis because it is the image of cancer cells being ripped to shreds.  The downside can be all of the caustic goo the destroyed cancer cells can then dump into Allistaire’s blood stream.  In anticipation of this, lysis labs are drawn once or twice a day to determine the level of uric acid  and she is given the Allopurinol that treats any excess uric acid.  I will also stand on the scale cradling her while our cumulative weight is being taken.  I’ll get her settled back into bed then get weighed myself, so that the difference can be calculated to determine Allistaire’s weight.  Weights are very, very important in transplant because of the many ways in which fluid retention levels can get severely out of balance.

I am so tired and so very thankful to be at this day.

ZERO Blasts today!

Lots and lots of walking!

80% done with radiation!

Transplant Consent Signed!

God is Good!

“My iPad 3 doesn’t warm my lap as much as my MacBook Pro.”

“I want to enjoy my beer in the garden but the wifi doesn’t work out there.”

“I type so fast that my expensive fake nails keep hitting the wrong keys.”

“I went to go babysit for an hour and the kids didn’t know what their own wi-fi password was.”

“I cant find the right balance between my fan and my electric blanket.”

“My au pair and my gardener are socializing too much. What should I do?”

“I have to turn down the bass in my car to look in the rear view mirror.”

“I don’t have enough chips for my dip, but if I open another packet of chips, I won’t have enough dip for my chips.”

“I tried to unlock the wrong Prius today. Twice.”

“I accidentally gave a homeless man a Euro coin. I was going to use that on my trip to Vienna next week.”

“The checkout guy at Whole Foods didn’t think it was funny when I asked if they accepted foodie stamps.”

Yesterday marked Allistaire’s 100th consecutive inpatient day.  Allistaire’s bill from her days on Hem/Onc service (2/25/13 to 5/28/13) is $1,251,124.25.  The bill for her time so far on the bone marrow team is $127,469.60.  If you add in the cost of her first time being treated for AML, which was $1,549,000, the grand total is:

$2,927,594.00

She hasn’t even had her transplant yet!!!!  And – she is only ONE child!!!  Can you imagine the cost of caring for the kids just here at Seattle Children’s with cancer?!  I ask all the time why can’t they just take Allistaire’s cancer cells and let them duke it out with various chemos in the lab before we have to dump all this junk in her body – hoping it works – hoping it doesn’t kill her in the process.  “We’re working on that,” is usually the response.

Now wouldn’t it be SO awesome if we could put a whole bunch more money into pediatric cancer research up front that would both save a whole lot of money in the long run and also much more effectively save far more children’s lives, without crippling them in the process?

If you haven’t already, please consider supporting me in Obliteride – a bike ride this August to raise funds for cancer research at Fred Hutchinson.  The clinical study for transplant that Allistaire has the gift of participating in is through Fred Hutch and 100% of funds raised go to cancer research.  Click HERE to connect to my Obliteride page to donate.

Another really great way to specifically contribute to the advancement of pediatric cancer research is to give to the Ben Towne Foundation whose mission is to, “accelerate the pace of pediatric cancer research – changing the way childhood cancers are treated and cured.”  Ben Towne was a little 3-year-old boy who was treated at Seattle Children’s and died of neuroblastoma.  His parents were determined to try to help things look different for other kids – 100% of donations go directly to funding pediatric cancer research.

Every single day Allistaire has another day to fight for her life is PURE GIFT!  Many of you have heard this before, but I tell you it has left such a deep gouge in my heart – I asked the doctor how long Allistaire would have lived with a Hematocrit of 9, and she calmly replied, “2 to 3 days.”  I will never forget that moment when I realized so clearly that if I lived in another country – if I was a Haitian mom, I would simply have a dead child.  If I lived 100 years ago, I would simply have a dead child.  Having your child die is one of the most common human experiences – until now, until here in this first world nation.  I get that there is an almost absurdity to the lengths we are going to save Allistaire.  There is a way in which perhaps we should be more accepting of death.  On the other hand – what in the world?  We live in this crazy, amazing point in history where I can see a picture – not a drawing – but an actual real picture of my child’s chromosomes.  The doctor’s finger glides across the page and shows me where one chromosome broke off and that little piece joined another.  We know so much and we know so little.  It is a glorious time to be alive and all, ALL GIFT!

Today Allistaire’s blasts are 10!  Yesterday we got word that the bone marrow donor has been medically cleared to donate.  Allistaire is negative for ALL viruses – no rhino virus – NO RSV!  On Thursday we will have the, “Data Review Conference,” and I will sign consent for Allistaire to have a bone marrow transplant.  Monday she will be registered.  Tuesday she will have her last day of radiation and on Wednesday she will take the first step of the actual transplant process – she will begin conditioning!

AND – Allistaire walked yesterday evening!  After her nap we picked up Burger Master and went to Magnuson Park.  I wheeled her stroller over the grass to the spot we like to sit and the girls have always loved throwing rocks in the water.  While JoMarie, Solveig and I sat on the blanket, Allistaire rose up out of her stroller and with slow, tentative, shaky steps walked to the water and began picking up rocks to throw in.  She walked and stood for at least 10 minutes.  Today at the zoo she walked and walked and walked – still far from her original strength and balance, but amazing! (And fear not, I’ll eventually get some video up for all to enjoy)

Praise the Lord, Praise the Lord – Father in heaven – thank you for every open door and every gift – for a warm evening, for two sisters together, for the lure of rock and water, for leg muscles and for will of spirit – thank you for helping Allistaire rise up and walk!

I walk and I pray.  Brushing my teeth, I pray.  Going to the bathroom I pray.  I drink my coffee and throw away trash and pray and pray and pray.  I ask God to help me to trust Him, to be reminded of His goodness, that I do know so well, that I have seen over and over and over.  I think back over the last two years and I am awed to see how He has walked me step by step through a number of very hard times.  He allowed me to wrestle and flail, to cry out in frustration and despair.  He patiently kept silent while I looked for Him and sought to hear His voice.  And then He answered me, over and over and over, He has spoken to me, using His Word to guide my heart and to soothe it and to hold it up.  The journey that preceded this journey, has aided me in walking these days.  I have seen God’s faithfulness in the now, right before me and I should not be surprised, because hasn’t He met me where I so desperately needed Him all those other times?

So as I tremble and my hands get hot and sweaty and the buzzing of nerves hums in my lower back, I pray and ask Him to help me trust Him again.  I imagine that it is Christ Himself who hands me the sheet of paper that my eyes will scan, rushing past the many lines of long words until I get to that one all important line, “Absolute Blast Count.”  I imagine that it is His mouth that forms the words of the number.  For I know that it is God who determines that number.  I anticipate my fear and disappointment if the number has gone up.  I examine the fear and answer it.  With each of these now few days prior to transplant, I know a higher blast count may declare the end.  My heart slams against the possibility of her death over and over.  I gag.  I will my eyes upward and out across the expanse.  I remember that this day and my life and Allistaire’s life are not in a vacuum.  We dwell in this small space of time and place, but the truth is that we are connected, linked to vast histories of humans across this globe and above and below the layers of time.  I call upon my imagination to fly up and out over her small form in the bed and I see the whole hospital and my gaze rises to see the hundreds of houses and the heights of the  buildings downtown.  I see now the curvature of the earth and see the lands to the north and east and south, the great Pacific behind me.  Our small, finite lives are intertwined with people’s hearts and stories across that great ocean.  And I let myself wonder how the actions and events of these small June days will echo through time.  And as I reach for that piece of paper that feels as though it determines the course of my life, my eyes meet His eyes and a smile grows.  It is the Lord of Heaven and Earth that has given me this day – He who spans all time and covers the earth.

“The stars so thick and close you could walk right into them.  Those times she thought that if she could just remember the stars, she would be all right.  Things might get very bad, things might be worse than she ever imagined, but the stars existed, and that was something.”  Amanda Coplin, The Orchardist

Indeed.  The stars.  How many times have I called upon the stars to give me hope?  How many times have I craned my neck that I might take in as much of that thick white gauze of the Milky Way?  My heart goes soaring through space gathering all memories I can catch of what I’ve learned about those inviting lights.  I am racing and racing, the electromagnetic spectrum and pillars of gas a blur.  I dive down, down into the sea to grab hold of that abalone shell whose hexagonal cells give it untold strength that man envies and tries to emulate.  I slow and I laugh as I listen again to the anesthesiologist who tells me that they do not know how anesthesia actually works, they do not know where the centers of consciousness are in the brain.

I gather up and hoard the word of God that declares His faithfulness, His presence, His unwillingness to let us go.  Round and round my mind goes taking in these truths.  Nature declares the spectacular glory of God.  His Word declares He faithfulness and goodness across all time and all people, all the way into eternity.  My little life bears His mark over and over as He has pushed into me.

Now I can extend my arm and grasp the paper and read the black shapes.  Sometimes my eyes rise to meet Him with untold thanks and glee and joy.  Sometimes they rise in sorrow and weariness and questioning.  Sometimes my breath cannot be found and I sense impending collapse.  But here, all around me are my weapons of defense.  I have gathered them, all these gifts piled up around me that I might take this blow in the context of all the rest.  It may still be a blow or a hot knife cutting into my chest, but – it will not be fatal.  Everyday I cling to Him and ask Him to help me hold this pain spilling out over the hollow of my hands and see that it dwells in the midst of an immensity of truth and reality.  I never, ever take the paper without first calling upon all these precious truths to gird me up.  There are times that news comes rushing in unexpectedly that knocks me off my feet. The shadow of the doctor’s legs behind the curtain or the hospital number on my phone and suddenly the knife cuts and catches me off guard.  The thick, hot blood seeping out and I strain to open my eyes, I concentrate on hearing His voice.  My trembling muscles stretch out and pull back what is also true, what is also real. Slowly the stream is slowed, the bandage applied.  The wound begins to heal.  It rips back open and eventually scars all ragged.

Yesterday I asked the nurse what Allistaire’s blast count was and she said, “408.”  And I thought, no, that can’t be right, that’s what is was the day before, can she check again.  Four hundred and seven on Friday and four hundred and eight on Saturday.  I didn’t go down and that could mean it might just be going back up.  Gather, gather, gather. Gather the truths that press hope against the wound and stop the flood of tears and fear.

This morning, I gather, pulling round me my remembrances of His faithfulness, my reminders of His control over creation, His declarations of faithfulness and provision.  I ask the nurse for the Absolute Blast Count.  Tracy’s sweet voice says, “Oh it’s down, it’s 260 and her LFTs are good too.”  Both liver function numbers that have to be 100 or below, are!  The one that had been over the threshold allowed for the transplant has dropped from 114 to 87 and the other dropped from 87 to 62.  Elation.  Heart light and soaring and thanking, singing round Christ’s face, “Thank you, thank you, thank you!”

Every time Allistaire cries out in pain, I wince and I ask hurriedly, “where?”  There are now nine places in Allistaire’s body that it seems there is cancer – in her marrow, back, lymph nodes in both arm pits, the inside of her chest wall, both femur bones and most recently, the lymph nodes on the back side of her lower femurs.  It’s rapid spread and breadth terrifies.  I lay in her bed with her and wonder if and when it will start showing up in her organs and start to strangle her life all the more.  The blasts in her blood rose to 786 on Wednesday.  We had a nasal swab done and awaited results, hoping for no RSV.  For days, no, for hours and minutes stretched and strained, I was on edge, ever fearful that a doctor was about to walk in with a test result that would say we are done.  Everything is moving so fast, which is welcomed in one sense after three long, slow months of chemo, but frightening as we see that we may be near the end.  Where once we urged the passing of time, now the thudding of my heart pleads for it to slow.

Wednesday marked our official transition to the BMT (Bone Marrow Transplant) team.  I actually had to sign papers to, “admit,” Allistaire which felt laughable after having been here so long.  But so it began, and with no surprise, I am now met with a whole new group of incredible, intelligent, strong, caring women folk who round each day.  God has blessed me with an attending BMT doctor that I actually know.  Ann Dahlberg, was the doctor who conducted the expanded cord blood study that Allistaire participated in during her first round of chemo upon relapse.  From the very first time I met Ann, I found her very easy to talk with and at the same time, one in whom you can place great confidence.  We have had a number of great interactions since and so it was with joy that we began our time with the BMT team, having her lead the way.  Wednesday also marked our first day of radiation.  Due to the many, many spots of cancer in Allistaire’s body, rather than a small finite number, Dr. Ermoian, finalized our radiation plan with only doing her back and left armpit. (TBI is not permitted in the clinical study.)  If he were to irradiate her femurs, she would be left with both legs not growing properly.  To do her chest would put her lungs at increased risk and the conditioning chemo, Busulfan, already poses a great risk to them.  All in all, the truth is we must entrust hard-core chemo and GVL (graft versus leukemia) to ultimately be her cure.  The blunt truth is that she is either going to make it and why deform her or she won’t.  He is choosing to do her back because leukemia in the skin is associated with a high rate of relapse.  While they do not think she actually has leukemia cutis, because there is only one spot on her skin and it is actually below the dermis, the skin still gets less blood profusion and thus is less accessible to chemo.  We debated the worth of doing her arm pit, but because the risks are not too high in that location and because it could reduce the pain she is experiencing, we are starting with 5 doses and then will re-evaluate.  I only have one pic so far of our radiation experience.  I will try to get one of the actual machine which is quite impressive, but the one you will see is of the door to the room.  The door is in the foreground on the right of the picture and as you can see, is just over a foot thick.  That first day I felt quite nauseous walking her past that door.  But, as with so much of this, every terror is met with the awareness that she is still with us and as long as she is, we have a chance and with out these terrors, we have no chance.

Thursday afternoon I sat in an overly warm room with the four kind faces of Dr. Dahlberg, Deb, the transition nurse, Ashlie, our fantastic social worker and Michelle, my strong and sweet support from the Pediatric Advanced Care Team.  Sten joined us via Facetime on the iPad.  The purpose of this “Arrival Conference,” is to communicate what is known about Allistaire and her disease, the purpose of transplant and the specifics of her transplant, including what testing must be done in advance.  The meeting began with my offering of a few unbelievably delicious Bequet Caramels made in Bozeman and the frank fact that with the tremendous amount of disease in Allistaire’s body, without this clinical trial, we would be having the conversation about this being the end and how to arrange to take her home to die.  You know this is true and you know it must be said, but I tell you to sit there in the actual room with the conference table and the papers spread out and to hear that Allistaire has less than 10% chance of surviving with a standard transplant and that normally she would not be offered a transplant at all because her odds are so poor, well – everything in you repels this reality and at the same time, hugs close that you are being offered a chance where normally there would be none.

At this point in our journey, I now know enough stories of other kids to have an idea of what can happen in transplant.  The list of horrors is too long and too exhausting to convey at the moment.  I will attempt to relay the basic phases of transplant.  Once you have had all the necessary testing to determine your body is strong enough to proceed, and the stem cell source is arranged, conditioning begins.  In Allistaire’s case, conditioning will consist of five days of chemo including Clofarabine and Busulfan.  These chemos are extremely toxic and are given at incredibly high doses, all in the hopes of utter annihilation of her bone marrow.  The goal is to destroy every last cancer cell.  When Allistaire first relapsed, only a small percentage of her cancer cells had the MLL (Multi-lineage leukemia) mutation.  Now nearly 100% are MLL.  These are some crazy resistant cancer cells who have survived seven incredibly hard rounds of chemo.  We have to hope and pray that they cannot stand up to these two powerful chemotherapies that they have never seen before.  At this point conditioning is set to start on Wednesday, June 12th.

Because the conditioning chemo not only wipes out cancer cells, but also destroys all blood stem cells, a new source of stem cells is required.  Assuming everything remains on track with the donor, Allistaire will receive an infusion of donor PBSC (Peripheral Blood Stem Cells) on Tuesday, June 18th.  Transplant day is considered “Day Zero.” During this time Allistaire will be feeling the effects of her conditioning chemo which include nausea, vomiting, intense fatigue, and very likely mucositis which is “painful inflammation and ulceration of the mucus membranes lining the digestive tract.”  Additionally, there are all sorts of complications that can arise with any or all of her organ systems.  Because of her extreme neutropenia (depleted immune system), blood stream, viral and fungal infections are also very possible and dangerous.  The number of meds in anticipation of all this has already increased to include Acyclovir to help prevent viral infections, Ursodiol to help the liver and Enalapril to strengthen her heart.

Around day 14, Allistaire’s new cells should start to engraft which means they will have traveled to her bone marrow and begun to make blood cells.  On Day 28 a bone marrow test will be done to determine the percentage of donor marrow.  Around Day 30, the effects of Acute GVHD (Graft Versus Host Disease) will begin to show up.  GVHD occurs as the T-cells of the new immune system attack Allistaire’s body as foreign.  The purpose of a really good stem cell match up front is to reduce the intensity of GVHD, but a PBSC transplant has more T-cells than a transplant where the stems cells are taken directly from the marrow.  In some cases, they will remove a portion of the T-cells from the cells to be donated but not in this protocol.  The most common locations in the body of GVHD are the skin, gut and liver.  During this time, the doctors try to play a balancing act of giving immunosuppressants that allow the new stem cells to engraft but not allow them to rage against the host body.  The long-term effects of the transplant due to the chemo includes sterility, hormonal problems, growth problems, secondary cancers, organ issues.  Chronic GVHD is also a real possibility.  For a more complete, description of bone marrow transplants, see this link to the National Cancer Institute.

What I’ve described above is always the reality for someone going into a bone marrow transplant.  The risks are high and are only worth it if you have a good chance of it working.  In Allistaire’s case, she has a relatively low chance of it working – exactly how low, we do not know.  The studies that have been done with this combination of Clofarabine and Busulfan have been done on such a varied group of ages, disease burdens and even disease types, that it is hard to really know where Allistaire would fall in the statistics.  The survival rate in this study was 30-40% after two years.  All of the patients had some sort of relapsed myeloid cancer.  Dr. Dahlberg emphasized that Allistaire is at extremely high risk of this transplant failing, of relapse, because of how resistant her disease has shown itself to be.  It is hard to think of putting Allistaire through all of this with the thought that it is very likely it will not work.  It is honestly also hard to think of having to live this wretchedness for longer – either in the relatively short time of a few months or up to a year or two.  It is awful to imagine making it through only to have a new cancer from your chemo or having your body disabled.  Yet, Sten and I continue to feel determined to walk forward until the door is closed for us.  We do it all with the hope that this short-term physical pain will result in longer life for Allistaire.  There is also the awareness that this transplant could bide her life for a year or two and in that time, another option might become available.  I absolutely don’t want to have to live clinical study to clinical study, but this may be our path.

The encouraging part of the meeting came when we began to talk about eligibility.  Allistaire must meet all eligibility requirements at the time that she is registered for the study, which may only occur within four days of conditioning.  Four days ahead of the 12th lands on a weekend which may mean that she would be officially registered on Monday, June 10th.  What this means is that we have 10 days in which to get Allistaire in a position to be eligible.  A number of tests that I thought could bar her from eligibility look like they will not.  She does not need another CT scan or echocardiogram.  Her most recent CT does not show any respiratory infection and her echocardiogram actually showed an improvement in the ejection fraction of her heart, up from 47 to 50 and it only needed to be at 40.  She will need another bone marrow test, which will take place next Tuesday, but the only purpose is to provide a sample for the study.  Clinically her lung functioning looks excellent.  Amazingly, while a nasal wash was conducted last night, even being positive for RSV will not prevent her from moving forward.  A number of additional viral tests are being conducted but ultimately it looks like there are two main standards of eligibility which will pose the greatest challenge.  The study does not allow a peripheral blast count of over 10,000.  We are so excited to see that once the chemo, Decitabine, was added, her blast count has started to drop.  The last three days it has gone from 784 to 615 and was 408 this morning.  I am praying these blasts will go to zero and stay there, though we only really need them below 10,000.  Lastly, her LFTs (Liver Function Tests) cannot be over two and a half times the norm.  Dr. Dahlberg realized today that one of Allistaire’s liver enzymes is indeed over two and a half times the norm and at this point would disqualify her.  The level is at 114 when the norm is 40 and so we need it to be 100 or less.  This number was not even noticed previously because it is completely normal within the realm of what Allistaire has gone through and there is no additional indication that her liver function has decreased.  Dr. Dahlberg thinks that these elevated levels are most likely due to one or more mediations Allistaire has or is receiving.  The methotrexate chemo that she had up until two weeks ago can raise these levels and the effects may not have yet passed based on how recently she had this chemo.  They have ordered her anti-fungal med, voriconazole, switched to Micafungin starting tomorrow.  This med can also raise this liver enzyme.  Additionally, the Ursodial, which helps clean out the liver, has been increased.  Hopefully these changes will be enough to lower the levels that are too high.  As a last resort, the Hydroxyurea chemo could be discontinued as it can also have an effect on the liver.  Of course we need all the chemo to keep the blasts down – so again, it is a balancing act.

While I was so amazed and relieved at how likely it now seems that Allistaire will be able to proceed with the transplant, the realities of what is before us and the great potential for failure, weighed so very heavy after the meeting.  I sat in the quiet room at the end of the hall looking out over the sea of green trees and sky wondering how in the world I am supposed to keep going.  I wondered how I could possibly endure Allistaire actually dying and being gone from our lives, an ever-present hole.  I confess I often want God to answer me far quicker and more dramatically than He does.  I am realizing that I want my hope in God to stand in place of the pain.  The difficult truth is that God’s promises stand alongside the pain because ultimately they are promises – some of which are yet to be fulfilled and others are fulfilled but outside of our sight.  At the same time though, there are present promises, but even these do not necessarily come at the rate of speed that I often want.  God promises me peace that passes understanding.  I do not sit there facing Dr. Dahlberg telling me of the great likelihood that Allistaire will die and smile and have no pain or fear.  That would be absurd and yet, not so very long after in that bright room, the tide of pain was slowed and met with the greater force of God speaking.  “You walk with me.”  “You eat the manna.”

Sometimes the great sweeping promises of God leave you wondering how they will actually take place – how tangibly they will come about.  It is great to have the hope of a resurrected life and heaven and no more tears or pain, but I still have to live somehow in the now.  But how?  Just the thought of enduring is tiring.  But then He met me and reminded me that all immense journeys are taken one small step at a time.  I must not only live one day at a time, it is one small action after another after another.  Endurance is tedious.  When the alarm goes off, you actually get out of bed.  You will eventually make it down that ever so long hallway to the showers.  You go through each step and then it is time to eat.  You look the barista in the eye and try to offer up words to the question of, “how are you?”  Whatever the day holds, you step forward and little by little you have lived through a day you thought might crush you.  Eventually the days amass and you have lived a week or a month you thought previously impossible.  But here is the savory truth, it is the manna which enables you not to just survive, but to grow and live and rise up and swell and overcome with beauty and grace and more life, not less of it.  Humans are capable of amazing feats of endurance and yet it seems that it is the unique provision of God that can transform endurance of sorrow into beauty and life.  Even as I say this though I am aware at how differently life is defined by the Christian.  Ultimately the Christian’s greatest joy is to dwell in the presence of God and know Him more.  This, He is faithful to abundantly provide.

The first picture is of Allistaire in pain from the lymph nodes on the back of her legs.  Such a sadsy face 😦

Tonight I have the joy of including some pics of Solveig flying her new kite down our driveway back home.  Everything about these pictures bring me joy and are taunting at the same time.  How I wish Allistaire and I were home with Sten and Solveig, flying a kite in the wind and picking flowers on a stormy spring day.