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.

Sabbath rest now.  That is what He is telling me.  You have what you need and you are able to rest, right now, right here.  The wind whirls and shudders and shakes and the sky is storming black and angry and I want to scream back in utter fury – where is your rest?  Do you see what is happening here God?!  Do you see me?  Do you hear me?  But I am spent.  I do not scream.  I can barely speak.  I sit.  I crumple.

As of this evening, her eyes have taken on red half moons that encircle the lower lids of her eyes.  Tonight she looks more like a cancer patient.  She stood and walked early this evening for the first time in a week.  She awoke early from her nap, called her nurse by pushing the big red button and then walked to the door to see if she was coming.  I was astounded and excited.  Maybe an hour later, Ange, the fellow came by to give us the MRI results from today.  I’m realizing now I haven’t shared the most recent development.  On Friday, during our radiation consultation with Dr. Ermoian, Allistaire complained about pain in her right leg (it was in her left leg that she originally had pain and where the biopsies were taken).  We assumed it was perhaps because her leg had gone to sleep while she lay in my lap.  Unfortunately she continued to express pain and so yesterday we discussed the need for another MRI.  So this morning she had the MRI and the results showed what appears to be more cancer, this time in her right leg, as it looks akin to her left leg.  Additionally, there appears, on the MRI, to be a possible spot on her upper right chest.  This cancer is moving frighteningly fast.  In just a few days these new places have popped up.  Sweet Dr. Ermoian has been in contact with the Hem/Onc doctors over the weekend, still thinking through Allistaire’s situation.  On his memorial day weekend, he has continually considered my daughter.  With this new development of additional locations of cancer, he said that he is now considering TBI.  TBI is total body irradiation where the entire body is exposed to radiation.  TBI is part of the conditioning regimen of the cord blood transplant that the doctors originally wanted Allistaire to have.  I asked if TBI was allowed as part of the transplant protocol and the fellow said that she didn’t know but that she assumed that if Dr. Ermoian brought it up, it probably was.  I want Allistaire to have the intense therapy she needs, if she needs it, but it is nevertheless so frightening considering the side effects, both short and long-term.  I don’t know much, but I know enough to want to throw up at the thought of her having to go through that.  It hurts my heart so much.

On top of all this terrifying speed of her cancer in her flesh is the rise of blasts today in her blood.  Today her blast count was 150.  She cannot have blasts over 10,000 and still be enrolled in the clinical study.  Sadly, blasts are a bit exponential in their rise, so while 10,000 seems far away now, it is entirely possible.  She has only been on the hydroxyurea for about 5 nights, but as of tomorrow, they are adding a second chemo, decitabine, which she will receive each morning.  Of course the hope is that this will sufficiently suppress her counts.  Interestingly, along with her blasts, her other blood lines, her ANC and hematocrit, have not dropped much either.  We’ll see.

Nearly every night now, I go to bed with the deep sensation of nervousness, often accompanied by eyes that sting and are weighty from crying.  It is hard to want to start the day.  When I awake, I lay there, realizing I have to face the unknown of another day.  Things are moving so fast now that from morning until night it feels as though the whole earth can sway and shift.  There is ever the background noise of high-pitched tension.  It rings incessantly in my ears, in the thick of the back of my skull.  Sten is here and we try to find enjoyable things to do, but everything is turning bland.  We struggle to have something to talk about because everything connects back to this.  Everything is stated according to the bar of if Allistaire is alive, or if Allistaire dies…It feels like everything is about to crash down around us.  The escape route is narrowing, and I am frantic to get there.  We are so close but it is still ever so very far away.  Our throats feel the constriction, the tightening, the squeezing and pressing in and down.  I was hungry but didn’t want to eat.  I knew I needed to eat and so I forced the food in my throat.  The food kept catching as I tried to force it down.  Allistaire looks at me with those tender, searching eyes and asks why I am sad.  I don’t speak.  I just kiss the warmth of her skull over and over.  I wrap my body around her in the bed and I ask how long do I have with her.  I walk the halls and I am literally flabbergasted that this is happening.  I am both present and not – I am merely looking in, not seeing that this could really be us.  The nurses and CNAs are so sweet and gentle.  They sincerely love us and I know they are desperately rooting for us, hoping with us that somehow we will make it through.  They are grieving with us.  Ange, the fellow, said that she is on call and we can have her paged any time in the night if we have questions, her green eyes pools and caring.

I don’t scream at God, I am too undone, too exhausted.  In weakness of voice,  I cry, “Father God, have mercy.”  I feel unsteady as I walk, often wanting to cave in against the hallway wall.  No matter the long view of this, my heart is being torn and ripped.

“Listen to me, O house of Jacob, all you who remain in the house of Israel, you whom I have upheld since you were conceived, and have carried since your birth.  Even to your old age and gray hairs, I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you.”  Isaiah 46:3-4

When I read this passage two years ago, my immediate gut response was, “Fuck you God!  I don’t want to be carried!  I want you to fix me!  I don’t want to be broken anymore!  I am sick to death of being finite and broken and a wreck.  Can’t you just come fix me, so I can be done with this weakness?!  I don’t want to keep needing to be rescued – I want to stand on my own two feet and walk.  Almost as immediately, came swooping in the sudden shocking awareness and conviction that I did not really want God, I wanted what He could give me.  Ultimately what I wanted from God, was for Him, in His power and perfection, to make me perfect so that I could be self-sufficient.  I did not want to need God.  I wanted to need no one.  I wanted to stand in my own strength.  Weakness and dependency were revolting to me and I wanted nothing to do with them…until that day that I shook my rebellious, furious fist at God and how swift and glaringly clear was His response.  In the next moment I realized that God wants me, more than anything else, to be in relationship with Him, that is His ultimate aim.  I saw in that moment that the purpose of Christ’s death was not to make me righteous.  The purpose of Christ’s death, was to make a way for me to be in relationship with the Living God.  Righteousness was necessary to pave the way to God, but it is a means, righteousness is not the end.  I felt the Lord smooth my brow and I saw that He had dealt with my sin, once and for all in Christ – now I could rest.  Now I was invited to see that my neediness was in fact gift because it was the means by which my eyes would be opened to see God and abide in Him.  God called me to something so much more glorious than having my sins simply washed away.  He washed away my sins and put them as far away from Himself as the east is from the west, because above all, He wanted to free me up to rest in Him.  Dependency went from repugnant to glorious.

There is weakness and brokenness and wretchedness all around me.  And I call out to the Lord to heal my child. Oh how I long to see her healed in this life and to always have her with me.  And at the same time I hear my Father entreating me to rest in Him.  He invites me to be carried by Him.  He promises to sustain me, in Him.  He, Christ Jesus, is my life blood.  I am needy.  I am tethered.  And where once I thrashed and struggled and raged and cursed to be freed of my finiteness, now I yield.  Now I sit down in my Father’s lap.  I cry and I mourn and I ask Him to give me eyes to see.  And that is His promise to me, that through this horror I will see Him – this “seeing through to God” place.  Ultimately, God values us knowing Him above all other things.  This feels utterly offensive.  It feels like a belittling of the value of my child’s life.  That is one way to see it.  But God’s audacious promise is that this pain will be worth it.  In the long view, this cutting, ravaging pain emphasizes and clarifies the immensity of God being more clearly seen for who He is.

Father be faithful.  I end this night in weariness.  I am ever so in need of you to come to me and care for me.  I need you to carry me.  I have no strength left.  I abide in You because You abide in me.

How many times can you hear that your child has cancer?  More than I knew.  But, today when the doctors relayed the news that the issue in Allistaire’s leg bone is definitely a leukemic infiltrate, I rejoiced.  Yes, Allistaire’s cancer is on the move.  Her lymph node in her left arm pit is now noticeably larger and causes her some pain.  It had been kept at bay for the last three months but has now risen up.  And now we have confirmation that it is in her leg.  Yet, all these are not closed doors to transplant.  No bacteria or fungus has grown, and for that I am unbelievably thankful!  There is now in the air a sense of fervor that we must get her to transplant.  I feel a bit of the pressing force of inertia as we accelerate forward.

Yesterday was another long day of no eating or drinking for Allistaire and she did a lot of lying around with intermittent dozing in our arms.  The whole afternoon was spent at the University of Washington Hospital Department of Radiology and Oncology.  Everyone we encountered was very kind.  Dr. Ermoian and his team explained their plan for Allistaire and what we can expect.  Allistaire’s armpit and knee will have proton radiation therapy.  The charged protons will rip through the DNA of the cells and bring about their death.  Fortunately, and amazingly, cancer cells are really not so good at repairing their DNA, especially when both sides of the strand are torn.  Yeah!  So, healthy cells should be able to regenerate, but not the cancer cells.  But this is not as black and white as we’d like.  The location where Allistaire’s leukemia is in her leg is right at the growth plate.  There is no doubt that Allistaire’s left leg will not grow ultimately, to the same length as her right leg; to what degree, no one can know.  And while there should be no real immediate side effects other than fatigue and redness of the skin that is radiated, there is also increased risk of cancer in each area exposed to the radiation.  In addition, her bone will always be a little weaker there and slightly more prone to fracture.  In her back they will be using electron radiation therapy because the area they are treating is much more surface level and they don’t want particles that are as likely to continue on through her body and damage her organs on the other side of the location on her back.  They anticipate it being possible that a bit of her lung, her ribs and part of her spine may be hit.  Where it hits bone, there will again be decreased strength, increasing potential for future fractures.  They are hopeful that because it is such a small part of her lung that could be hit, that we won’t see any concerning issues. Clearly, we are thankful her leukemia has not shown up outside her marrow in places much more sensitive to the damage caused by radiation, but we really must pray that nothing new comes up between now and transplant.

For the radiation simulation, Allistaire was put under and then positioned in a strange blue foam bed that creates a form or cast of her body position so that every thing can be aligned properly between the areas they want to radiate and the settings on the computer.  They simultaneously use the CT scan to provide images of her chloromas inside so they can position her body and line things up.  So now she has some very precisely drawn cross-hair targets on her leg, armpit, and back.  She also has two lines on her torso to help align her body.  We were given specific instructions as to how to keep them safe for Wednesday’s first dose.  Some kids actually have these points tattooed on their body and I suppose they may ask us about it, but they haven’t so far.  All the information and calculations they gathered on Friday will be given to the Dosimetrist who uses the 3-D images of Allistaire’s body to determine exactly how to shape the beams of radiation, finalize positioning and the doses of radiation to be administered.  We begin on Wednesday, May 29th.  She will have radiation each day, except the weekend, and finish on Tuesday, June 11th.  Fortunately we are scheduled everyday at 8am which means an early start to the day but also, not so much hardship from being unable to eat or drink.  Also, Dr. Ermoian told us that fortunately AML is sensitive to radiation, so we can expect Allistaire to have some relief of the pain in these areas.

Our time ended with news we did not to anticipate.  We were given a tentative transplant date.  I was in the bathroom when Dr. Ermoian came by to drop off the radiation schedule.  Sten handed me a piece of paper with a calendar showing all the dates of radiation.  There in blue ink in the little box for June 18th, was written, “Tentative Transplant Date.”  What beautiful shocking news!  To see those words, the words spelling out in blue the event, the action in which all our hope is placed.  Unless God sees fit to intervene with a miracle, a bone marrow transplant is Allistaire’s only hope and there it sat in blue.  The storm has just been raging so long; the wind buffeting my ears and whipping my eyes, but there, there you think you see a bit of light in those heavy steel clouds.  Could it be?  Could it be there far off, the storm is beginning to break just slightly?  Oh, how I hope so, how I desperately hope so.

As we drove back to Children’s Hospital, I spoke with Lisa Getzendaner, a physician’s assistant whose job it is to coordinate the actual procurement of the cells from the donor in conjunction with the timing of the conditioning for the patient.  She has put into action the requests she needs to make with the European registry and we should have more firmed up info by Wednesday or Thursday next week.  So at this point these are all tentative dates.  Given our radiation schedule and the time it takes to make arrangements with the donor, the plan is for Allistaire to begin her conditioning chemotherapy on Wednesday, June 12th.  The first day she will get Clofarabine.  The next four days she will receive both Clofarabine and Busulfan.  Then she will have a day of rest which allows for remaining chemo to wash out of her system.  On this day of rest, on the other side of the planet earth, the donor will have their bone marrow stem cells drawn out of their blood.  Then an airplane will fly over the north pole and land in Seattle.  Within an innocent looking cooler, bags of cells will arrive at the hospital, and be hung on her IV pole.  The lines will connect and in that moment, some other person’s capacity to produce life blood will enter my child’s body, to rescue her, to save her from the certain death that would otherwise come from the final death of her own bone marrow.  Between 80 and 160 million cells will infiltrate Allistaire’s body. Hopefully they will set up shop and start to produce blood cells for Allistaire within 2-3 weeks.  Engraftment typically occurs sometime around day 18.

With mixed trepidation, hope and joy we walk forward.  We cuddle with Allistaire.  We listen to her adorable tiny voice and watch her eyes as she strives to express her thoughts, needs and desires.  We kiss her bald fuzzy head and plant kisses on her wee ear lobes.  We hold her warmth close to us and run our hands across her smooth beautiful cheeks.  We cherish her and soak her in.  We surround her and love her and hope for her.  Father, thank you for every open door, even if it means more cancer.  We continue to walk forward until you block the path and close the door.  Thank you for all the outlandish ways you have provided so far.  We step incessantly into the unknown.  My eyes fixed on you Christ.

As you can imagine there has been a lot of emotion in the last several days and even today there is much I would like to draw out of my heart and mind and put into writing, but you know what, that takes a whole lot of energy which I’m a bit short on at the moment – that and a good chunk of uninterrupted time, which is also lacking.

Here is the last day and a half in short.  After much back and forth between the Oncology attending doctor and the orthopedic surgeon (who by the way is a 34 woman with three kids and two fellowships under her belt and is actually super nice), it was decided that surgery would happen yesterday.  The orthopedic surgeon was hoping for more time for her ANC to rise and more time of antibiotics in her body. For the last 24 hours, she had three different antibiotics running every 6-8 hours.  The Oncology doctor wanted to prioritize getting a biopsy as fast as possible in order to determine what is really going on inside her bone so that it can be treated most effectively and to consider how this new development may impact the timing and/or eligibility of her participation in the research study.  The two docs compromised by having only biopsies removed versus attempting to clean out the bone which would also require a larger incision and thus put her at more of an infection risk with a larger wound to heal.  We were told surgery would be around 7pm and it turned out to be around 4pm instead – quite a lovely surprise.  The surgery went great and 8 samples were removed.  Because it is bone we are dealing with, first the pathologists must decalcify the bone and then they can attempt to grow bacteria and fungus and look to see if it looks like a leukemic infiltrate.  It is possible we should have some results by tomorrow.

So here is the really great news:  more leukemia in the form of a leukemic infiltrate or a bacterial infection should not prohibit Allistaire from moving forward with her transplant!  She’s already got leukemic infiltrates (turns out while her back went down a bit, her lymph node has increased in size a little), and these are not disqualifiers. And a bacterial infection should not be too challenging to treat, especially with the time we have prior to transplant.  So that is really exciting!  However, if the pathologists conclude that it is a fungus, we have a big problem.  A fungal infection would delay transplant for 6 weeks.  So a fungal infection is not necessarily an automatic “we’re finished,” but it certainly complicates the whole picture and would result in a substantial delay, in which time who knows what else could come up.  Dr. Pollard says she has some possible ideas about how we would handle it but we did not even begin to discuss them.  We will take that on should we need to.  The only other complication could be if they do not get any conclusive information from the biopsies.  In the event that the nature of Allistaire’s infection is unknown, there would be further necessary discussion to decide what our options are.

While we await the discovery of what is really going on inside Allistaire’s leg, plans for moving forward have been made.  Tomorrow at 12:30, Sten, Allistaire and I will go to the University of Washington Hospital, to meet with Dr. Ralph Ermoian, the Radiation Oncologist for a consult.  Then from about 1:30 – 3:30, Allistaire will have a radiation simulation, where she is put to sleep and then put her in position and they do all of their calculations and calibrations to prepare to do spot radiation on the areas of the leukemic infiltrates.  Her actual radiation will begin next Wednesday, 5/29.  She will be sedated for each of the 10 days that she will receive radiation.  This radiation is not part of conditioning for transplant the way that TBI (total body irradiation) would have been if she were getting the cord blood transplant.  In the event of either transplant she would have been given spot radiation but because she is not getting TBI, the number of spot radiation doses is being doubled.  In addition, the plan is that we will be transferred to the BMT (Bone Marrow Transplant) team this coming Tuesday, 5/28.  Lastly, an echocardiogram was done today to check the health of Allistaire’s heart.  Dr. Pollard is hopeful that with the med Allistaire has been on for the last few weeks, we may see improvement over her previous numbers.  We should know results of this tomorrow.  Tonight she began an oral, daily chemo called hydroxyurea.  She cannot receive the chemo she has most recently been receiving because the transplant protocol limits what sort of chemo the patient can receive within a certain time span prior to transplant.  The purpose of the hydroxyurea is to keep her cancer at bay.  We should see her beautiful blood counts begin to drop.  She has actually had a few ANCs in the high 500s and hasn’t needed a red blood transfusion in nearly 2 weeks.  If her counts aren’t dropping, the dose of hydroxyurea will be increased to twice daily.

I am of course very excited to be moving forward taking substantial steps toward transplant.  It is so taunting though.  You so very much want to be elated and let down your guard, but there are still so many doors to walk through to actually get to transplant.  I am praying this is not a fungal infection in her leg and that her heart is either stable or improved.  I praying that she makes it through all the additional testing she will still need.  Conversations with the donor continue and I have not been told any hoped for transplant dates.  If she does not have fungus and her heart is strong enough, we will soon have what is called the, “Arrival Conference,” in which all the details of the transplant and the testing are discussed.  We may also be given a bit more information about the donor at that time.  Then Allistaire undergoes additional testing.  I actually have no idea at this point what sort of additional tests they might need to perform.  This portion of the process could take up to 2 weeks.  If we make it through all the testing, there is a “Data Review Conference,” in which a million consent forms are signed and you basically say yes, you can dump poison into my child’s body.  And then at last Allistaire would have her conditioning which includes two different types of chemo.  How often or how long she would get the chemo, I have not yet been told.  But when at last all the poison has entered, you get new cells – you get your transplant!  That’s when all sorts of other crazy hard stuff begins.

Oh dear, this can feel all so overwhelming.  On the other hand, there is a way in which the increased sense of absurdity of the situation, makes me a little more calm and able to laugh.  I mean, what are you going to do?  I can not control whether a pinky-fingernail-sized bit of infection in Allistaire’s bone will be full of something that keeps the door open or slams it shut.  I have absolutely no control over the state of Allistaire’s heart.  I am present and active here with her, but ultimately, this is simply out of my hands.  It is up to God how this will turn out and He is able to open and close doors with no effort.  That gives me comfort.  There is nothing actually hard for God to do.  Allistaire’s future is for the Lord to decide and in accordance act.  That sounds really quite terrifying, that is, unless you have seen and tasted that the Lord is good.

Another really super great part of today, was having Sten come for a visit!  It is so good to have him here.  You should have seen how unbelievably sweet he was to Allistaire when he first came in the room.  She was still asleep for her nap and he just so tenderly swept his fingers over her little baldy-top head and the perfect slope of her nose.  They really are just painfully cute together!  I knew Sten would be a great dad, that was one of the reasons I married him.  And he is so sweet to me and I delight to have him here with us!

Allistaire herself is a bit better today.  She was in a quite a lot of pain when she came from the recovery room after surgery back to her room and cried out a lot for medicine until we could get the IV Dilaudid flowing in.  We increased the dose and the frequency for overnight.  She was originally getting it every 3 hours and was able to wait 5 hours between the final two doses that she’s needed.  Six hours after her last Dilaudid, she was finally settling down for a late nap and said that her knee hurt and asked for some red medicine (the Oxycodone).  Once the Dilaudid had worn off this morning she seemed to become more like herself with a few smiles, willingness to sit up in bed, lots less sleeping and far more verbalizing.  She is still unwilling to bear any weight on her leg even to stand at this point, however.  I pray the antibiotics take quick effect to give her both her mobility back and because they are fighting bacteria – something we prefer over fungus!  

What a day.  After a long night of Allistaire moaning in pain because of her left knee and trouble falling back to sleep over and over, I literally awoke crying, tears in my eyes fearing the MRI would show cancer in scary places like her brain and spinal column.  We take out her Hickman catheter and put in a port and go to Disney World and that will be it I thought.  I worked hard to bring the fears before the Lord, to look past the immediate and hope in the long view.  I was settling in, feeling a bit more at peace and about to partake of my morning coffee and breakfast sandwich (once again, for about the 80th time, funded by one of you sweet people), when I got a phone call I was not expecting.  When (206) 987-0000 shows up on your phone, you know to be on the alert.  It was the Children’s Hospital financial counselor calling to ask what I knew about our insurance not paying for the clinical trial transplant because she’d just received a call from her social worker saying that this had been brought up in early morning rounds that I had apparently missed.  I determined to go straight to the one person who should be able to straighten things out.  She is on vacation.  However, her sweet supervisor was so gracious to me, but didn’t immediately know the answer, not having our file in front of her, and thought she remembered that they were appealing the denial.  In a moment I think all the intensity of these days came rushing in because my heart started to pound in the most thick slow way and my whole body flushed red.  I could hardly speak getting off the phone with her.  I broke down, yet again, in Starbucks, though thankfully in my mostly hidden corner/favorite table spot.  About an hour later I was trying to get Allistaire to drink apple juice with contrast in preparation for her CT scan when the supervisor called back to say she’d just gotten off the phone with the Blue Cross Blue Shield rep who emphatically affirmed our insurance WILL cover the transplant.  I don’t know where the failure of communication or misinformation began, but I was so relieved.  Minutest later, Allistaire threw up all her apple juice with the contrast and it was time for clothing and bed change and laundry for her blanket and doggy.  Back to the task of getting more contrast into Allistaire.  We succeeded within just minutes of needing to have it in on time for the CT scan.

Allistaire mostly laid in bed and sucked her thumb and minimally watched movies.  Sweet Dr. Pollard came to talk with me just before her CT and MRI.  She said that it looks like Allistaire qualifies for the transplant, at least such that we can move forward with the standard testing prior to transplant.  One of the main questions had been, whether or not her chloromas (the leukemia in her back and lymph node) would disqualify her from the clinical trial transplant.  It was determined that they would not so she would be ready to move forward assuming nothing unexpected showed up in today’s scans.  It sounds like the radiology oncologist will likely want a biopsy of the location on her back where the lump was to see if there is active disease.  This will help him to determine whether or not to simply radiate at the sight of the chloroma or expand the field of radiation.  At this point I don’t know when this would be scheduled.  I am told that the BMT people at the SCCA are in communication with the preferred donor to coordinate timing.  Depending on this timing, Dr. Pollard may give Allistaire a bit of chemo just to sort of tide her over until transplant.

In my conversation with Dr. Pollard I mentioned that Allistaire’s left leg and it seemed, more her knee, had been hurting her since yesterday.  Sunday evening she was running around at the playground with Papa and when I saw her mid-day on Monday she said her leg hurt.  By the evening, when we went out foraging for food for dinner at about 9pm, she would not even stand on her leg to get into her stroller.  She has not walked or stood since and required several doses of pain meds overnight and into the day.  Dr. Pollard quickly made a phone call to add the left leg to the MRI scans that would be done.  At about 4:45 she was finally wheeled into the recovery room to wake up from anesthesia.  Within 10 minutes there was a sudden call to add an x-ray of her leg before returning to her room.  She woke up about 15 minutes later and was given an x-ray with the handy portable x-ray machine that the guy simply wheeled into her recovery room.  But I of course was wondering what could be up and soon learned there was concern about an infection in her bone.

So we return to her room and just start to get settled in when the orthopedic resident comes to talk to me about their concern that she has osteomyelitis in her distal femur of her left leg.  They see on the MRI a small walled off area that could be infection.  Dr. Pollard had mentioned that an infection was possible due to really low counts for such a long time.  The joint does not seem to be involved.  Typically such an infection would show up in particular blood lab values that indicate inflammation (these labs were drawn but have not come back yet), fever, inability to bear weight and a high white blood cell count.  However, because Allistaire’s immune system is all wacky from ongoing chemo, lots of these indicator may not be present because of her body’s inability to mount a sufficient response.  Another possible reason to believe this could be an infection, is it’s timing that coincides with having her antibiotic, Cephapime, discontinued in the last day or two.  She has been on this antibiotic since March 16th, and it may be what has been keeping this infection at bay.

The orthopedic doc consulted with his attending doc and they decided that they would have the infectious disease docs stop in and determine what sort of antibiotic to start at what dose and that they would possibly do surgery on Thursday or Friday to clean out the infection.  The location of this spot is close to her growth plate so they will be using some sort of guidance to avoid the growth plate.  So then the resident doctor comes in and says that they are going to start Cephapime tonight and the infectious disease docs will come tomorrow.  Not ten minutes later the Fellow comes by and says they will not be starting antibiotics because she is wanting to get Allistaire in for surgery tomorrow to see what is going on in her bone because it also could be a leukemic infiltrate – i.e. another chloroma.  Her thinking is that the BMT docs will want to know exactly what this is, and she doesn’t want to have anything slowed down for transplant.  She does not know if a chloroma in this location would in any way prevent transplant but of course, that will be yet another question for the BMT folks.  She wanted to hold off with antibiotics to get the clearest look at what this is.  Of course, if it is a leukemic infiltrate, that will be very clear.  A surgery tomorrow would mean being NPO (not eating or drinking) until she could be worked into the surgery schedule which would quite likely be later in the day.  She ate no more than 5 fish crackers since she was able to eat this evening and not even 5 sips of milk.  I was not excited about basically 48 hours of no eating, but what are you going to do?

So that last conversation with the fellow was at 9:30pm.  It’s now an hour later and the CNA just came in to check Allistaire’s temp once again.  Once it gets over 38.3, they check every 30 minutes.  She usually is at around 36.6.  Well, she just hit 38.7 which is officially a fever which means blood cultures will be drawn and antibiotics will be started.  I have no idea what this will mean for any surgery tomorrow.

On a really super AWESOME positive note…there is no evidence of disease in her brain, spinal column or spinal fluid!!!!!  These are all major victories!  All of her organs are looking good from the imaging.  There were two small nodules on her lungs from at least a month ago which is extremely common in kids who have had a lot of chemo.  The assumption is that these are small areas of fungal growth.  She was switched to a broader anti fungal, voriconazole, as of about 3 weeks ago to provide better fungal protection.  Today’s scan showed no change with one of the tiny spots and that the other tiny spot looked diminished in size.  In addition, it looks like the area on her back from her original site of her cancer’s return, has decreased somewhat in size.  Nothing was mentioned about her lymph node so I’ll have to ask about that tomorrow.  Her flow cytometry results are not back yet, but there was a revision in the morphological results.  The number they are reporting is 62%.  Hey, I’ll take any decrease we can get!  This is 8% less than the ballpark number they gave Dr. Pollard yesterday.  Of course, it has often been the case that Flow results are higher than morphology but we’ll just wait and see.  This doesn’t change the transplant option but I will be curious to see what the final numbers are because it may at least indicate a decrease from a month ago.

All in all, I am so thankful for so many good results!  There was good news today!  One of the last things Dr. Pollard said in our meeting today, however, is that she had to be honest, that she always has trepidation until conditioning begins because things can always change.  Today’s issue with Allistaire’s leg which has only made itself known in 24 hours is a perfect example.  And perhaps you get a better sense of how even interacting with the multitude of doctors who collaborate on Allistaire’s behalf can be an ever-changing, often confusing and sometimes frustrating reality.  I think I need to harken back to advice given me by a parent who had walked one crazy road with his AML son.  He told me how you just have to kind of ride things out.  Don’t get too amped up when things look good.  Don’t get too low when things look bad.  And as my nurse friend responded when she heard that – yeah, or your adrenal glands might explode.  It think I was on the verge of internal combustion today when the question of the financial coverage of transplant was raised.  I need to learn to just ride the wave a bit more.  Highs and lows.  Wow is it a ride.

Tomorrow is another day with who knows what’s in it.  Oh yeah, that guy knows – that God up there – He knows.  For now, I just am yearning for sleep and looking for His mercies being new in the morning.  Great is His faithfulness 🙂

When I went to stand, I found that the strength had drained from my thighs.  I felt weak, about to crumble and my face does, it contorts and pulls and my temple pounds.  I keep my head low and the sobs come.  I hide behind my sunglasses, trying to find a way out, where to go?  I circle the outside of the hospital desperate to find a place to be alone.  How can it just keep being bad news?  Is it really possible that this is my child, that this is me, this is my life?  She is too full of life and delight and joy.  How can she be the one to die?  I feel so weary.  So very tired.  I cannot even cry as much as I want because my heart feels dulled by the pounding of bad news after bad news.  The pain in my face is intense, and in self-preservation, I try to keep the tears from coming – because it is not really the tears but the unbelievable pressure of pain, seeking to be released, pressing on the inside of my eyes and cheek bones.  I feel lost – I don’t know where I can go to be alone with this grief.  I wander and settle on a sunny set of back stairs because my skin is chilled and raised with bumps despite the warm afternoon.  I wonder how long this torture is going to last and then immediately I correct myself and know that this torture is nothing to the torture of her actual death coming to be.  I think of Rachel and Merle and my legs shake as I imagine how forlorn they must feel, how every day and every night is met with the knowledge that he is gone.  Gone.  I think of Allistaire and I am them, trying to live each day, trying to live in a life with a gaping, swelling hole.  There is no thought now and no action that does not get linked with thoughts of her death.  Any attempt to think of the future, whether a month or a season or a year from now, is tied to the vision that she may not be with us.  I don’t buy a size up if I buy her new clothes at all.  She may not be here –she may not grow into a size four.  She asks me about being a baby and if she is big now.  I tell her yes, you are big.  She exclaims while asking, “I’m getting bigger?”  “Yes, my love,” yes and it hurts so bad not knowing if you will ever really be big.  I watch her eyes that lie in stretched lines, the corners of her mouth downcast, the slightest bit of pain in her expression when she asks, “Do you know that I love you mommy?”  “This much and this much and up into the air,” she says with arms outstretched.  I love her so and the pain slices through the moment.  Every morning when I awake whether in the hospital or out, there is the dull thud that something is wrong, this is not what life is supposed to be.  I went to my locked cupboard for room 269, to pull out the fuchsia towel I brought from home to dry the purple bowl and the spoon with the swirl at the end of the handle.  I brought one green plate, one purple bowl, one glass with the yellow daffodil and the green leaves, one fork, one spoon and one knife.  I suddenly saw Sten with the dish towel perpetually thrown over his shoulder when he’s in the kitchen and I missed him so bad and I found myself crying, missing a different life where there is not pain and sorrow and brokenness all around.  I thought I was merely going to eat a bowl of GrapeNuts.  I walked to Starbucks during her bone marrow test and I saw the boy with hat and glasses, the color of his neck both shockingly white with red blotches, his hands not really hands but melted, I assume burned.  I want to run and run and run.  What is this place?  I am so weary of being surrounded by sorrow and defeat and broken and scarred and I wonder, will there ever again be good news?  But I have to keep going.  I have no other choice.  It’s time for Allistaire to wake up from her nap and it’s time to change her dressing, after all, it’s Monday.  We do this over and over and over and you wonder when will it end and you stop yourself, because it ending could be your worst fear come true.  You can’t ask for it to end because you cannot imagine your life without this one you love so much, so thoroughly, so utterly.

Morphological results show that Allistaire’s bone marrow is about 70% cancerous.  Flow Cytometry results tomorrow will give a more precise count, but regardless, we now have one option: the transplant with the matched donor.  The bone marrow doctors are conversing to make sure that Allistaire really is qualified for this clinical study that is her only option.  Tomorrow at 2:45 she will have a CT scan of her chest, abdomen and pelvis.  She will remain sedated for an MRI that will look for disease elsewhere in the body, such as the brain and along the spinal column.  I don’t know what it will mean if she does have disease in those locations.  It will be likely a hard day because Allistaire cannot eat after 8am until she is out of her sedation, which will likely, be after 4pm.  She cannot drink after noon.  The tests are of course right during her naptime.

I am a reader.  I love to read.  When I was a teenager I would make myself sick on Saturdays, staying in my room to read a good book, not wanting to eat or even stop to go to the bathroom.   In all the best stories there are unbelievable lows where all seems lost, but you keep going, sure you are on the scent trail of redemption – you are sure it will all work out even if all seems like a wreck.  Every fiber of my being aches and burns with sadness and sorrow so expansive it cannot even escape the confines of my flesh.  And I ask you Father, Redeem, Redeem, Redeem!  Turn this around somehow!  But I don’t know how long the story is.  I don’t know at what point this day lies in the tale. Hold fast to me Father.

At long last we are on the eve of the bone marrow test that will determine what direction Allistaire’s transplant will take.  Allistaire is scheduled to go in for her bone marrow biopsy and aspirate tomorrow morning at 10:30.  It is important that they get a really good sample to best enable accurate testing to be done.  As I mentioned before, we will likely know morphological results by the end of the day on Monday and final Flow Cytometry results by the end of Tuesday.  Dr.  Pollard told me a few days ago that the bone marrow doctors are actually still not totally sure what transplant they will recommend if we are in a situation where Allistaire’s bone marrow is somewhere between 5-25%, given that this would qualify her for two very different transplants.  I had been told last week that they prioritized the Busulfan/Matched donor transplant over the cord blood, but I guess the doctors are really just wanting to see where things stand in her marrow before they decide.  Please be praying for agreement amongst the doctors once we have results.  If Allistaire is put on track for the cord blood transplant, she will be transferred to the BMT (Bone Marrow Transplant) team on Tuesday, 5/26.  If she is to have the matched donor transplant, then she will be transferred to the BMT team on Monday, June 4th given that it will take a bit more time to arrange an actual donor.

This week Allistaire will also need a CT scan which will help assess her respiratory state and look at her back and left arm-pit lymph node where the cancer originally came back.  The nasal wash test done a little over a week ago confirmed that Allistaire still has rhino virus, which is quite evident with her runny nose but is negative for all other viruses of concern, including RSV!  We pray the RSV stays away!  Thankfully Allistaire’s ANC (Absolute Neutrophil Count) has been a bit on the rise.  On Saturday it was 286 and today it was 315.  This is the highest Allistaire’s ANC has been in the last nearly 3 months since she began chemo.  Hopefully her body will be able to more easily fight off anything that comes her way.  The previous 2 CT scans have shown “no change” with the lumps in Allistaire’s back and lymph node.  It is possible that Allistaire will have to have surgery this coming week to biopsy these two locations to check to see if what is showing up is scar tissues and/or dead cells or if there is any active disease there.  This could impact the radiation she will receive.

Once Allistaire is transferred to the BMT team, there will be about 10-14 days of testing and getting back results to make sure her body can handle having a transplant and then she will have the conditioning chemo and potentially radiation.  Then, finally, at long last, she will have her transplant.  Looking at the calendar, I am guessing she will be end up having her transplant sometime around mid to late June.  Wow does that still seem so far away.  At least we are getting closer.  It is also possible Allistaire will get to be out-patient for part of the time prior to conditioning. We’ll see.  Interestingly, there are pros and cons to staying in the hospital (free babysitting during naps so I can get out a bit vs. non-stop people in your space).

I want to thank all of you who have donated to support me in Obliteride so far!  I upped the original/required fundraising goal of $1,000 to $5,000 given that you helped me meet the original goal in the first five hours!  As of now, I am almost half way to reaching $5,000.  If you’ve been pondering giving but haven’t done so yet, please jump in and join us in furthering cancer research – the very research responsible in large part for Allistaire being alive today!  Also, I went on my first ride today with my new fancy butt/crotch padded shorts my parents bought for me.  Looking at the maps, I think I road about 15 miles.  It was a beautiful evening and so fun to see all the lush plant life and views of the lake.  I’m not sure how much I’ll be able to ride, but I’ll look forward to sneaking in a ride during Allistaire’s nap time here and there, weather and schedule allowing.

This week probably won’t be an overly pleasant one for Allistaire given all the times of necessary sedation and pain from having her body probed.  For myself, I guess I’m just thankful to finally be at this point and hopeful that the we will be moving forward with a transplant soon.  I am SO thankful there is a transplant option available to Allistaire regardless of what the test results end up revealing – it takes some of the pressure off of tomorrow.  I know that we could quite easily be in a position where  a significant amount of disease in her marrow would simply disqualify her from getting a transplant.  If that were the case, going into tomorrow would be so much harder.  Almost funny (and wonderful) we have 3 possible paths.  Also, I almost forgot – looks like we have one more matched donor for a total of 3!!!

The room was nearly square and the walls were painted white and unadorned.  The only color was the honey yellow of the pews and floor, well, that and the bright blue of sky that filled each window.  Sun poured in and lit the air.  The voices rose up and out, no accompaniment of instruments, just pure human expression of lungs filling and pressing down.  As we began each song, it came to me again: these people know how to sing; their voices blending together with strength to worship their God.  Hymn after hymn declaring His glory and love and provision.

I had begun to cry as I walked up to the church, when I did not expect to.  I cried as the men bore his casket down the center of the room and placed it up front just feet from where his parents and little brother sat.  I cried as we sang all three verses of “Jesus Loves Me.”  Just as the words of scripture have become ever so much more real and known in these hard times with Allistaire, so did the words of the hymns take on dimension like never before.  Streams of tears ran down both sides of my neck.  Tears for the bluntness and realness of death, that it really can and sometimes does, come to this.  Tears for the knowledge that this mom will never again in this life touch the warm flesh of her child nor hear his voice or see the light of joy and excitement in his eyes.  Tears that we ourselves, might come to a day like this.  Tears for the mystery that we could sing praises and adoration for such a good God who both allowed this day to come and who loves us so completely and so tenderly.  Tears that we live right now in this earthy life and that we must continue to wait for the fulfillment of many promises and tears that there is an eternal view that buoys us up.

Crisp white shirts, dark vests and beards of varying proportions and color.  Dresses almost sweeping the floor, sleeves touching wrists, flowing fabric of like cut and variation of color and pattern, transparent stiff white caps with hair bound up within.  These are the Old Brethren German Baptists of which Benton’s family is apart.  May I say it was true delight to be with them, this part of Christ’s body that is new to me and part of me as I am part of Christ’s body.  These are my brothers and sisters, bound by the same blood.  Our deep fundamental need for a savior and the overwhelming flood of God’s grace through Christ resonated true as I listened to the men speak.  It was pain to look into the casket and see Benton’s face distorted in the end by the rapid growth of his cancer and it was pain to hear the thud of dirt hitting the closed lid, and pain to see the mound of dirt covered in flowers when at last I could see past the hundreds that had gathered.  But Benton is not there.  He is not in that casket; he is not in that dirt that confused his little brother. Now he sees His Lord with unveiled glory and Benton has been made new.  So we gathered in the great hall and feasted on a bounty of delicious food and everywhere the walls echoed the sounds of talking and laughter and life.

I went to Benton’s funeral because I felt compelled to go, drawn.  I went to face what is real and what is possible.  I went because it felt sacred, I felt the need to bow my head in prayer and lift my jaw in song to mark this passing, this leaving of one life to enter into fullness of life.  Life eternal.  Life abundant.  I went that I might look Rachel and Merle in the face and know their pain but thank them too for going before me in a way, going before me in faith.  I wanted them to know that I will continue to beseech God our Father on their behalf, asking that He would continue to uphold them and Benton’s brother, Wilson, as they make their way forward, now both free of the constricting hold of cancer, but yet severely wounded by its ravages.  I wanted to dwell with the body of Christ in such a time as this.  I wanted Benton’s death to be surrounded by the truths of God and not simply the truths of science and the hospital world.  And it was good too, to be with a few families connected to the hospital by their own children’s fight against cancer and more so connected by Christ and our hope that He would hold us up now as we all await each next step, each next scan and bone marrow test, to know the unfolding of God’s plan.

Sometimes we do not know how we can possibly go on because the road ahead seems so very long and unbelievably hard.  The cardiologists came by earlier in the week to discuss the already decreased function, the weakening of Allistaire’s heart due to her chemo and their desire to give her medication in order to try to protect it going forward into transplant.  The damage can continue over time and the possibility exists, while unlikely, that one day her heart could begin to fail and she would need a transplant of her heart.  “Either she dies or it just doesn’t end,” I cried out to these two men, who simply stood and nodded with grave faces.  When I consider the possibilities it is all so overwhelming.  It is lie that God does not give us more than we can handle!  Do you think I can handle this?  NO.  But it is truth that He does not leave me alone to handle it because He takes it up upon Himself and enfolds me into Christ, tucking me inside Him that as I dwell in Christ, I can walk under the weight and am not buckled or crushed because over me and around me is my mighty God who not only carries my burdens but carries me as well.

What in the world does it really mean that God will carry me?  It all sounds so lovely but in the thick of it, when you hear the word, “hospice,” what can God really do, tangibly to care for me?  I cannot tell you how and I wondered when this all began again, would He really, truly show up in that darkness I so feared.  He told me, so clearly He told me, “I AM in that darkness, you WILL be found by Me.  I AM the God who turns darkness into light.”  These were His claims to me, and while I put my hope in that, too I wondered if such a thing was truly possible.  I reminded God that His name was at stake – “You had better show up God!” And as I walked further into groping darkness, darkness thick and darkness suffocating, there was eventually a turning.  It did not happen in a flash, in a moment.  First I had to feel the darkness, to experience its cloaking of my life and its attempts to devour me, to come swamping into me, trying to drown me.  But in relatively short time, there was turning of darkness to light.  Truly it was like the darkness of night being turned to light of day.  You look for it.  You stare and you cannot see it, but then you are aware that it is happening – it has happened because you see light where there had only been darkness.  You watch it unfolding around you and you laugh because it is happening when you didn’t know how or if it really would.  I cannot tell you exactly when God turned this dark into light but I can tell you with certainty, I walk in the light today.  There is joy this day.  The Spirit of God has been at work in my heart and giving me eyes to see.  Again, as I did nearly one and a half years ago, I know peace that passes understanding, that doesn’t make sense, that should be absurd were it not real.  There may be darkness ahead, darkness like I have not yet known, but with each step forward, being held in Christ, I am even more expectant of dawn.

Tuesday and Wednesday evenings are Allistaire’s last days of chemo prior to transplant.  Dr. Pollard has scheduled Allistaire’s bone marrow test for next Monday, May 20th.  Typically we will know preliminary, morphological results that afternoon assuming it was scheduled early enough in the day for the pathologists to have time to review it.  Flow Cytometry results will take a day longer.  At the bone marrow meeting last Thursday, it was decided that if Allistaire has blasts over 5% but less than 25%, they will still prioritize the clinical study transplant involving the conditioning chemo, Busulfan, and the 10 out of 10 matched donor due to its better statistical outcomes.  So we wait, but it is wild to me that we are at last nearing the end of this part of the process.  In about one week we should know what direction we are headed with regards to transplant.  Please be praying that if we need to make use of the donor marrow, versus the cord blood, that arrangements with the donors can be made quickly and without snags.

I also wanted to take a moment to address all you sweet, sweet folks who have and continue to pray for us and give so generously to encourage us and ease the burden along the way.  First off, please forgive me for failing so miserably in being in contact with you and getting out thanks in a timely manner.  Please know that every text, phone call, card, visit and gift, is such a joy to Sten and I and really, truly means so much to us.  Thank you for all your faithfulness in your prayers and for those who have amazed me with your consistent encouragement with cards and such – you are such an example to me that I hope to one day emulate.

Many of you have expressed concern that you do not know what to say or fear that you may or have said something wrong.  Here’s the deal – this is a time of wrestling – for all of us – there is no neatly packaged set of words that can change this reality or take away the pain of it.  I am not expecting such from you and you should not expect that from yourself.  The point of words are two-fold:  to be an expression of love and care, and to sort through what all of this means and is.  Wrestle with your words.  Do not give up because it is hard or because they seem insufficient.  They are, on one hand, utterly insufficient!  Again, words will not take away this reality or the pain of it.  Yet words have power!  Words make something more real!  Remember Christ is called The Word!  God is clearly all about words.  And while the book of James makes it clear, we can bring about great harm with our words, please do not keep silent for fear of your words being imperfect.  This reality with Allistaire is forcing us all to pull out all the big questions of life – they are out in the open for us to examine, to attempt to name and describe and understand.  Let us not fear our insufficiencies so much that we remain quiet and shove the questions back into the recesses.  I speak and I write because I want to explore this land of reality I am in.  I head this direction and then see no, it is not quite right or it is lacking in some way or overemphasizes or underemphasizes something of import.  But I must strike out if I am going to have a shot at learning this place in which I dwell.  Do not fear being trite when conveying God’s word to me – God’s word is mystery and wonder and gigantic truth, too big for any of us to scale, but say it, name it, declare it and know that we both see that we are touching mystery.  Ann Voskamp talks in her book, “1,000 Gifts,” about how when God had Adam name the animals, there was a way in which the naming was about taking possession, about taking hold.  We use words to hook into realities that we might better take them into ourselves and consider their many facets, dimension upon dimension.  Our words can never be enough to conquer and dominate these enormous realities, and yet, why deprive ourselves?  Let us begin, as we grapple, to more and more take hold of that which God has given us and convey love to one another at the same time!

Last Tuesday, May 1st, I spoke with Kira, our SCCA Insurance Coordinator, who told me the good news that she had been able to give Laurie, the Unrelated Matched Bone Marrow Donor Search Coordinator, the official go-ahead to pursue any and all testing she would need to find a match for Allistaire – the hospital’s Compensated Care program would cover the costs.  Wow did that turn out to be a whole lot easier than trying to get an appeal through with our insurance company in a timely manner or having to raise huge amounts of funds.  It seemed like a click of a button.  There is a way in which it was really, really easy to have this provision and yet that is an illusion. What it actually took to make a way for the funds to complete donor testing is a whole lot of people who have given to Seattle Children’s Hospital.  There would be no Compensated Care program if folks had not felt moved and chose to act by giving away their money to the hospital.  And what does it take to move a heart to move past greed and have compassion and to courageously give away what they could keep for themselves?  And what did it take to provide the resources they were able to give away in the first place?  And what about all the staff and their salaries that exist to coordinate this giving and receiving and distribution?  What seems like a minor exchange of paper and/or emails is actually the last simple step of an amazing reality that took an incredible number of amazing acts to accomplish.

Kira also detailed to me how she and the SCCA lawyers would be working to appeal our insurance company’s denial/exclusion of payment for clinical studies.  Remember that, should Allistaire not be in remission, she has one option – a clinical study – which our insurance company does not pay for.  She told me that it has been a very difficult fight in the past with our insurance company and that ultimately, if we had to, the hospital would again pay for the transplant.  “Oh,” I said, “I think Montana just passed a law that prohibits insurance companies from denying coverage for cancer patients for clinical trials.”  Kira was beyond excited and I told her I would pass on this link to her with more details.  The very next day she called to say that indeed such a law had passed and that she had in writing that both the clinical study trial and the original standard care transplant had been fully approved by our insurance.  You see, 2 days before our phone call, Governor Steve Bullock of Montana signed into law Senate Bill 55.  Wow – what amazing timing – how handy!  But check this out – “Senator Kauffman and a coalition led by the American Cancer Society Action Network started working to remedy this problem facing cancer patients nearly eight years ago.”  This was years and years of effort.  I called Senator Kauffman that very hour to thank her for her work on this bill and to let her know that only days after being signed into law, my three-year old daughter was going to be one who directly benefited from it.  She thanked me for relaying our story and that many had provided testimony akin to ours as to how great a need this is.  I stand in awe and giddy, make-my face-hurt-smiling joy – check it out – look how God provided!  Did I have any clue or care in the world about such a law eight years ago?  Did I know that Senator Kauffman existed?  N0, all of this groundwork and provision has been being crafted all out of my sight and knowledge – but it was there – it was real and it is powerful and significant and it blesses me in my very hour of need.

Yesterday I got a call from Laurie, the Search Coordinator.  Three of the six originally requested donor tests had come back.  Two of these three are perfect 10 out of 10 matches.  Now who are these people – these two people who through some circumstances of life were moved to join a registry they have to pay to be on and annually renew their commitment?  What has transpired to bring their life blood to be available to enter my child’s body across this globe?  Think about it?  Is that not actually crazy?  Is that not wonderful and beautiful?  These are two people, like you and me with names and stories and lives, they took steps to give – to make their very flesh available to bring life to another human – someone they have never met and can probably not even imagine.

I look around and I see walls toppling – formidable obstacles seemingly easily and gently swept to the side – the way ahead made clear and open.  I force myself to consider and look behind the simple facts and ask how?  How did this come to be?  What innumerable steps and actions must have taken place to bring about this reality?  How inscrutable the path of chain reaction that produced these blessings. We choose blindness and in turn, despair, when we do not look beyond the surface, when we simply take things as they are.  NO!  NO!  There is more, so much more that is the backdrop to each reality we experience.  You know what movies I love?  I love the movie, “Crash,” and “Babel.”  They are tremendous and beautiful because in a visual way they give us glimpses of how intertwined are our lives.  Perhaps now may not see the time to bring up Chaos Theory – but it is one of my dearest loves and so…in 10th grade I read this spectacular book, “The Turbulent Mirror.”  I am no mathematician, though I know I would simply swoon over and over at the beauty and elegance and intricacy of mathematics.  There are two specific ideas that have stayed with me.  First of all, the tiniest change in a “system,” can have extraordinary, radical, monumental changes.  One tiny, seemingly insignificant act can produce a ripple of change that utterly changes the outcome.  Secondly, out of seeming chaos, come patterns or “strange attractors,” as they are called.  Within the chaos, if you iterate the system enough, the further and further you get to infinite iterations, you see shocking, beautiful patterns emerge.  The most famous of these is called the Mandelbrot Set.  What seems like chaos only “seems” so.  If we could look further and further and further out into and across time, we would see beautiful patterns emerging.  God, Ancient of Days, is at work intricately bringing about all things to accomplish His glorious plan.  Rarely do I get to see what makes sense.  So much of the time, at my tiny finite level all seems chaos and chance and random.  But I push myself to ask, to ask, how?  How can this be true?  I do not actually expect to discover the answer to my questions, but it is the pushing to ask how that illuminates the magnitude of how great is the provision.

Faith requires that I look backwards to have courage and hope in my future.  I must take stock of what has happened in the past, in order to mount the enormity of evidence necessary to believe in God’s goodness and faithfulness in the future.  I do not face weighty challenges to my faith with no backdrop.  Belief in God and evidence of His faithfulness did not begin in December 2011 when Allistaire was diagnosed.  No, in my own life and all around me there has been overwhelming opportunities to see God.  It is all these God-sightings over the years that enable me now to see God more and more.  It is the innumerable times that I have seen God in the past that give me eyes to see Him now in darkness.  Two previous posts come to mind, one written almost exactly one year ago which you can read here and the other from last fall that you can read here.  They are both about witnessing God’s provision which is ultimately about experiencing His goodness which in turn gives me courage to walk forward when I do not see the way.  I consider the days ahead and realize that I am both unable to know what lies ahead and what I imagine as the possibilities leaves me wondering how, how will I live – how can you possibly meet me God the way I will need you to?  So.  I choose to look back.  I force myself to consider and wonder about all the bounty of past days and it leads me – it guides my eyes to see that I abide In Christ and He is the way forward and in His perfect God-ness, He has already gone before me, just as He has done countless times.

I’ve had hours of conversations with doctors in the last few weeks.  Slowly questions are being answered and other questions are let go of.  Sten and I have wondered how much do we research and pursue different options for Allistaire.  What do we set aside and what do we pursue?  One thing that has brought greater peace about the possibility of this clinical study transplant is that it is not a new course of treatment – it has been studied at the University of Michigan, the University of Indiana and at M.D. Anderson and because it has had promising results, it is being now offered as a clinical trial here by Fred Hutchinson.  In addition, I was able to talk to a doctor that was recommended to me as one who might be especially knowledgable about transplant without remission.  He is the bone marrow transplant department head at his institution and while he gave me a few things to consider that might help Allistaire (both actually after the transplant itself), what he spent most of his time talking about is how we should feel very confident in where we are at.  He reiterated over and over that we had the best of what is offered and that anything that might be available in the country, is available in Seattle.  He said that as a parent, he would take great confidence in his own children being treated here.  This was unsolicited encouragement and came a few hours after me venting to God that I did not know what to do about pursuing lots of leads outside of the Seattle Cancer Care Alliance.  I am also told that Fred Hutchinson has some of the highest long-term survival rates.  Tomorrow at 12:30pm a number of bone marrow doctors and the Hem/Onc doctors will meet to discuss the most complicated patients, Allistaire included.  Please pray for that time that God would direct their thoughts and words and guide their decision-making.  Incrementally, we are feeling more and more at rest entrusting ourselves and Allistaire, after many, many questions, to the skill and experience of these doctors we’ve been given.

In the midst of all these meetings and phone calls, Allistaire has been doing quite well.  Over the past several days her joyousness and sweetness to staff seems to have markedly increased, as evidenced by numerous remarks.  She has started engaging much more with the nurses and CNAs.  She has silly antics and voices and faces and tries (and succeeds) in escaping the room through the laundry pass through cabinet.  She has figured out how to call the Unit Coordinator at the front desk and holds conversations with them.  We have gone out on pass at least one, and often twice, every day.  A new friend from Bozeman brought out her tricycle so she has had a great time riding the Burke Gilman trail and continues to play at the Magnuson Park play ground at twilight and into the dark – after the other kids leave.  So much free physical therapy and opportunities for joy.  Today we saw a whole group of adorable fuzzy yellow-headed goslings on the lake.  She also continues to eat relatively well and gained .4 kilograms since her last weigh in.  Her blasts hit zero on her last blood draw before receiving the second dose of her chemo.  They have remained at zero since then. She even has an ANC of 100 that several days ago was as high as 216.

Doctor Pollard wants to give Allistaire three doses of this chemo (which are 10 days, not 7, apart).  Sometime between day 5 and 8 after that third dose, she wants to test her marrow.  So by my calculations, she will get her third dose of chemo on May 14th which would then put the bone marrow test sometime between May 18-21.  Since the 18th and 19th are on the weekend, I wouldn’t be surprised if she plans for it on the 20th, or maybe even as early as the 17th.  She also wants to test Allistaire again for RSV two weeks before she anticipates she would be transferred to the bone marrow team. Once transferred to the bone marrow team, it would be approximately 2 weeks until the actual day of transplant.  I think her plan is to test for RSV in time to treat it prior to transplant if necessary.  Timing is ever-changing but it looks like we are likely a little more than a month out from our much hoped for transplant day.  Please be praying for two other little boys who also have AML who are having similar struggles getting into remission.  I have not heard much about transplant for them but this is in part due to the limitations of languages as none of us speak one another’s native language.  Nevertheless, it is clear that they both are also struggling and no matter the barrier of language and culture, we speak the same language of caring immeasurable for our children and wanting to see them live.