To be like the Python and Two Paths


IMG_0623 IMG_0620I sit with the sun warming the back of my hair; wind all gusting outside.  When my sister-in-law Briana, brought me food earlier, we stood at a distance from each other, unable to hug – RSV likely sticking to my clothes and sickness gunk on hers from her own two children.  We stood there with the wind whipping our hair.  Tears in her eyes and attempts at words.  My eyes stayed dry and I felt nearly mute.  I could tell her the details of the days ahead of us – maybe the next 4 days.  Beyond that I did not know.  I do not know and so I did not speak.

I don’t know how to take this reality into myself.  I say the word, “death,” because I want to take away some of its severing power and pain.  I look at the white board that counts down the days until we move into the new hospital and I say out loud, “I wonder if we will ever be there.”  In my mind I form the thought, “what if my love is the first to die in that place, that place “made not of just concrete and steel, but of hope” as the sign says.  I push the words and thoughts out.  I force them to move outside of me because I cannot bear to hold them in.  I want her hair to fall out because I want that chemo to work damn it!  But then I think, what if these are the last days I run my fingers through these flaxen locks.  Some may think I focus too much on the possibility of losing her, that instead I should set my hopes on her healing, her cure.  But what if our days with her are so short?  What if I have gone about assuming I have more time with her and in doing so I don’t pull her into me as much as I could have.  I might have years with her.  I might have months.  I might have days.  I want to listen to her voice.  Watch the way she sticks her tongue out to the side when she concentrates on a task.  I want to take in the curve of her long dark lashes.  I force myself to look upon her beautiful chubby legs when I change her diaper.  There I see the bruises.  Bruise blue, bruises brown, bruises yellow.  Another bag of platelets hangs from her pole.

I say the words we are all tempted to skirt around.  I say them to bear witness to this reality.  I think nothing of having another needle pushed through her back into her bone marrow.  They did it on Tuesday and they will do it again today.  I don’t even skim the risks and side effects of the chemo available to her.  I do not have choice.  Assessing risks is luxury.

What do I hold onto to gird me up?  Where do my trembling hands grasp?  Some have said I am brave.  Some have said my faith is strong.  Some have said they are proud of me.  Most have said that they cannot imagine.  Here’s the thing – I cannot imagine and I am dwelling in the midst of it.  I am not strong.  I am not brave.  I am weak and powerless and given to fear.  I cling to God because I must – because there is literally nowhere else to turn.  It is a new thing to be here in the hospital, knowing things are bad but also knowing that we’ve tried something, something that was supposed to work, but that has mostly failed.  The falling down into the dark is incremental.  You keep swallowing realities you once flung from yourself.  Who thinks they’re going to have a child with cancer?  Who has hardly ever even seen a little person with a bald head? Forward motion for us right now feels like walking yet further into thick blackness.  There is no charted course.  The python’s jaw enables it to consume prey far, far larger than itself.  I grope for such a mechanism to allow me to take in these realities far too vast for me.  Death seems simple yet simultaneously incomprehensible.  I walked to the grocery store this morning and saw the stack of firewood for sale standing to the side.  Without trying, I imagined us camping, but without Allistaire.  I suppose this is how death and loss come into me.  The whole of it is too much, so bit by bit; bite by bite I take its bitter taste into my mouth.  The lump in my throat seems impossible to swallow, but I take a breath and force it down.

Are we without hope?  “No, I don’t think we’re there yet,” says doctor Ho.  I am thankful for these words but they are still not the words I want to hear.  I don’t want to be here.  We stand at a crossroads.  Two very different roads and it is our decision to make – we must direct our course.  Dr. Pollard presented two very different options, but in her opinion, neither stands out as superior over the other.  One of the options is a clinical study looking at the safety and efficacy of the drug, Plerixafor, which is an immunostimulant used to mobilize hematopoietic stem cells.  Hematopoietic stem cells are found in the bone marrow and are the cells that give rise to all the other types of blood cells.  Plerixafor has been used most commonly to mobilize the stem cells out of the marrow and into the peripheral blood so that they can be harvested for bone marrow transplant.  The rational behind this study, is that use of Plerixafor in combination with standard chemotherapy, will draw the cancerous stem cells into the peripheral blood where they can be better accessed and thus destroyed by the chemo.  Use of Plerixafor in this way has already been studied in adults.  This clinical study we are considering is looking at the use of Plerixafor in pediatric patients.  It is near the end of the study and the dose that Allistaire would receive, should she be enrolled, would be the highest dose the study is considering.  It would be used in combination with high dose Cytarabine and Etoposide, both chemotherapies Allistaire has had in the past.

The second option is a chemo regimen consisting of high dose Cytarabine and Asparaginase.  Asparaginase is a chemo that Allistaire’s body has ever been exposed to.  Unlike some other chemotherapies, Asparaginase does not directly interrupt the replication process of the cancer cell’s RNA and/or DNA, but rather depletes a substance, Asparagine, that cancer cells need to survive.   Asparaginase severs the chemical bond of Asparagine and breaks it into aspartic acid and ammonia in leukemic cells.  The result is a depletion of Asparagine, which inhibits protein synthesis, cell cycle arrest in the G1 phase, and apoptosis (cell death) in susceptible leukemic cell populations.  So essentially, Asparaginase destroys a substance essential to the ongoing life of a leukemia cell.

Neither Dr. Pollard nor Dr. Ho (our current attending doctor and another AML specialist) is recommending one option over another to us.  They do not believe either of them will cure Allistaire of AML but at this point our goal is to get Allistaire into enough of a remission that she would be able to proceed with a transplant.  True remission is considered less than 1% leukemic blasts in the marrow, but at this point we may have the ability to move forward with transplant with less than 5% blasts and absence of “bulk disease,” which is the term they use for the leukemia in Allistaire’s back and lymph node.  Apparently, transplant is not at all good at curing bulk disease, given that its goal is destruction of cancer in the marrow.  Bone marrow results we received yesterday show at least 25% of Allistaire’s marrow is leukemic blasts.  Her bone marrow test from almost four weeks ago showed 1.1% blasts.  We are still waiting for results to determine if there is leukemia in her spinal fluid.

In order for us to even have the clinical study as a choice, Allistaire must pass a number of eligibility tests.  So far she has passed two and we have one to go for this to even be an option.  First she had to have over 5% blasts in her marrow, she passed that one with flying colors.   In this case bad news meant there may be an option open.  Secondly, and this one we are really happy about, the CT scan did not show lower respiratory infection from the RSV.  Every test showed that Allistaire is over her RSV.  All clinical findings (visible symptoms, listening to her lungs etc.) indicate she is not sick.  And finally the test from the nasal swab came back showing no remaining RSV.  This means Allistaire is out of isolation and Dr. Pollard even recommended we not hole her up in her room but to let her get out and ride the bikes.  She affirmed the mental health component of this.  We are so thankful for all of this, not only because it means we are done with annoying Ribavirin, but more importantly because this puts Allistaire in a stronger position to take on more pummeling from chemo.  The CT scan also showed that her, “bulk disease,” is not worse.  This did not at all seem comforting to me.  I want it to be better, not just “not worse.”  Apparently, it is pretty easy to see if it is worse on a CT scan but much less clear as to how much better it might be.  So they consider it stable, and it may be better than that but a CT is not very good at giving that quantitative information.  We are still waiting on results from Allistaire’s lumbar puncture, which will tell us if the cancer is in her spinal fluid.  If it is, she cannot participate in the study.  I expect we should have those results soon.  The preliminary results, from looking at a smear under the microscope, show no cancer cells.  Lastly, Allistaire had another bone marrow test today, which will be sent to John’s Hopkins to determine the quantity of the CXCR4 receptor in Allistaire’s marrow, which the Plerixafor is designed to block.  We personally will never know the results of this test and her eligibility is not contingent on it. Part of what the study wants to explore is how the quantity of the CXCR4 receptor impacts the goals of use of Plerixafor in this context.  Interestingly, in another unrelated study with a different drug, the assumption of having more receptors equating to a better response was proved wrong when the opposite effect was seen.

Sten and I are trying to ask lots of questions and weigh what seems best for Allistaire.  Because cancer cells can mutate and thus become resistant to chemo they have seen before, there is value in giving her body something it has never seen, hence the benefit of Asparaginase.  On the other hand, sometimes chemo that has worked in the past, works again.  All the options include Cytarabine, which was also in the chemo regimen she just had.  It is known to be very effective at reducing bulk disease and we certainly had evidence of this – at least on the outside.  Allistaire’s back is nearly flat where once was a 3 by 4 inch mass and her lymph node is substantially reduced in size.

As we consider the clinical study, several advantages to enrolling Allistaire have come to light.  The first is the idea that right now it looks like will likely have the option to enroll her.  She currently has a five-day reservation as a study participant, which will end on Friday.  This gives us five days to get all the required testing complete and to decide if we want to enroll her, assuming she is eligible.  Because the study has been open for a long time, and that they are currently looking at the last and highest dose, we have no way of knowing if it would still be open down the road.  We also recognize that the conditions that would qualify Allistaire now could easily change.  Right now she has no active infection and it looks like her spinal fluid will be clear, however, we have no guarantee of these being true in the future if we were to later turn to this study as an option.  Right now it is an open door.  We also asked Dr. Pollard about the toxicity of this chemo regimen and she said that it is fairly well tolerated and in general, she would not expect that it would put her organs in a position that would be unable to tolerate future chemo.  Cumulative toxicity is a major consideration but something that is ultimately hard to predict.  Lastly, and perhaps most important to Allistaire specifically, the Plerixafor may help deal with one of Allistaire’s unique problems.  From the very beginning, it was clear that Allistaire’s cancer cells produced yucky fibrosis in her marrow, which is essentially like a structural labyrinth or web.  (I am going to attempt to add a picture that is from her very first ever bone marrow biopsy in December 2011.) The concern with fibrosis is that it may make it physically difficult for the chemo to infiltrate, and thus destroy, these barricades.  The job of Plerixafor is to block the receptor that keeps the cancer stem cells tied up to the interior of the marrow, and causes them to move to the peripheral blood where chemo can much more easily access them.  This is why we are hopeful that this drug could, in a very unique way, be of benefit to Allistaire.  Granted, we know that the chemo still has to work at destroying the cancer cells, but the chemo won’t even get a shot at this unless it can get to the cancer cells.

The alternate option is a chemo regimen of high-dose Cytarabine and Asparaginase.  Less than a year before Allistaire’s initial diagnosis, it was determined, after much study, that the then current 5th round of chemo for AML was not advantageous enough to outweigh the risks of yet more chemo, so it was dropped from the BAT (Best Available Therapy).  The pros of going this route is that these chemos are very well-known and that Asparaginase would be new to Allistaire’s cancer.  Because this is simply an already known and previously standard chemo regimen, there would be no restrictions on its availability to Allistaire, precluding some significant unexpected change in her health.  For all these reasons we are leaning towards enrolling in the study and having the Cytarabine/Asparaginase combo as a backup plan if this clinical study doesn’t work.  It sounds that regardless of what path we choose, we will not be waiting for Allistaire’s blood counts to come up and we will start the new chemo early next week.  This means that Allistaire will remain extremely vulnerable.

Allistaire is not the AML norm.  She has all sorts of weird, uncommon issues all rolled up into one package.  It is extremely uncommon to relapse in your skin as Allistaire has.  Fibrotic marrow happens but is also uncommon.  Lastly, her cancer cells show the MLL (Multi Lineage Leukemia) rearrangement, which accounts for only about 20% of AML patients.  We are dealing with relatively small numbers for statistics of what to go on.  The statistics say Allistaire should have never been here in the first place, so what power do statistics have over what will be true for our little love?  Here’s yet one more curve ball Dr. Pollard just discovered.  The cytogenetic tests from Allistaire’s bone marrow from relapse shows something sort of wild.  There are still leukemia cells showing the MLL rearrangement, but not nearly as many.  More significantly, a large number of cancer cells have mutated, but not for the worse and not just for the better, but, back to “normal.”  Now I am unclear what it means for a cancer cell to be “normal,” but I know that the chromosomal changes in the cancer cells significantly impact prognosis.  There are chromosomal changes that can both worsen and better prognosis.  Dr. Pollard said it is not uncommon for cancer cells to sometimes mutate back in the direction of normal, but very rare for them to become entirely normal again.  And to beat it all, these changes certainly did not seem to aid her in the attempt to get her into remission.  Mysteries.

There was a time a few months ago, that as I drove in the brightness of a winter day, sun reflecting on snow, I shouted out to God.  I did not cry out so much as yell – I do feel crushed.  I was in the throws of another painful crisis in my life.  The Lord brought the passage in 2 Corinthians 4 to mind where it says, “We are hard pressed on every side, but not crushed; perplexed but not in despair; persecuted, but not abandoned; struck down but not destroyed.”  I am in despair, I feel destroyed – I feel all the ground giving way, I feel I am going down.  Everywhere I look is devastation.  I don’t see how your word is true Oh God!  My raging anger was really the cloak of my breaking heart, so wounded I did not think I could bear it.  Sometime later the Spirit of God laid another bit of His word on my heart.  “For I am convinced that neither life nor death, neither angels nor demons, neither the present or the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate [me] from the love of God that is in Jesus Christ our Lord.”  What a painful peace that brought me.  Oh yes, Lord; now I see.  I may watch everything I love falling apart around me, broken, finite, but there is one thing that will never change.

This is how I can walk these fiery roads, where blazes threaten.  There is something left when all else falls.  When my world collapses around me, there is yet one thing that remains.  There is nothing that can separate me from the love of God.  This is how there is no ultimate despair.  This is how despite it all, I can stand, because I stand in Christ, I stand on what He has done.  This is comfort and wrenching pain all at once because it means, yes, all earthly things may be taken, may be destroyed.  I can become wild with fear and anger and grief incomprehensible when I consider this fact, when I feel the gaping left by things taken, hopes stolen away.  My whole being groans and moans and rages that this is life – what sort of life is this where there is so much death?  It is life in a broken world, broken by sin and it causes me to cry out over and over, “Come back Lord!”  Every fiber of my being aches with the desire for Christ’s return and the completion of all things and the fulfillment of all promises.  I want the “no tears,” and the, “no pain,” right now!  Why would He tarry?  Why delay?  Why extend this suffering?  Mysteriously it is somehow in this crucible of pain, in this broken wretch of a place that we actually see God.  Somehow, we, through this toil, finally come to the end of ourselves and at long last have eyes to see through the veil.  When everything is stripped away and we are left ravaged, in our utterly needy state, our eyes finally lose their blindness and the truth of this life enters us.  I wish it weren’t so.  I wish the beauty of the mountains and the joy of family and the satisfaction of work was enough to draw me fully to the Lord, but somehow it is insufficient.  No, the path to God is a blood-strewn path.  The path to the Lord is a landscape where agony rises up.  It is the place where truest life and truest death face one another and are put to the test.  This pain clarifies.  Everything is at last put in its proper place and you see what rises up.  You at last see, after all else is burned away, what remains, what is essential.  All my flesh fights against having to walk this road.  I push and I exert and I cry and I rail against these realities.  But at last I am exhausted.  At last I am at the end of myself.  What is left?  I am nothing but dry dead bones in the wasteland.  But there is one, who, in His unfathomable love for me, His brutal love that first allowed the flesh to be ripped from my bones, this God bends low and once again breathes life into this dust.  Once you have died and you know the newness of life that can only come from the Creator, you sense you will never have to die again.  You start to adjust to this new strange flesh; flesh that cannot be ultimately hurt.  Oh, you may be injured, but you will never again die.  There is only one death.  You now live a life of a strange peace; a peace that makes you aware you are invincible.  You can no longer be utterly taken down.  You swell and you lift and your mourning is turned to joy because, look at you, can you believe it?  You are alive.  Death did not conquer.  It tried to defeat you.  But you know what, it did not win!  I am hard pressed on every side.  But I am not crushed.  I am so perplexed, but I am not in despair.  I feel struck down but I am not destroyed!  I had to pass through death to know this life.  And I am tasting it and it is like nothing I have ever tasted before.  It’s refreshing is indescribable.

We have before us two options.  As I looked at those two papers Dr. Pollard handed me, I cried out, how can I choose?  What do I know about these things?  Who am I to make this choice?  We think we want to choose what happens in this life.  We think we want to be in control of the path our life takes.  What fools we are.  I am fully aware of my inadequacy to make a decision about what chemo regimen is best for Allistaire.  Not only do I know almost nothing about how chemo works or how her specific cancer cells will respond to the chemo, I cannot foresee what effects the toxic chemos will have on her organs.  I don’t know what infections threaten or what other clinical studies might be available down the road.  Oh the agony of having to choose what path to take.  Sten and I don’t want that responsibility.  We long to defer to the wisdom and expertise of these doctors.  Who are we to choose and how will it feel if the path we choose turns out poorly?  Amusing in the most bitter of ways that we rage at God for not letting us take the reigns of our life.  We look at what is before us and audaciously think we can accurately assess the situation and determine the best course.  I am desperate for Allistaire to live.  This seems best to me.  Any other options seem like pure horror.  But who am I?  What do I know about the present realities of which I can only see the most minute fraction?  And do I know what lies ahead?  God is constantly inviting us to defer to His wisdom, to His goodness.  He who stretches out over the whole earth and across all time – He who spoke all creation into existence and He who holds it all together – isn’t He so clearly more suited to determining the course of my life?  And yet we shake our fist at Him.  We say we don’t believe in Him because at our core we despise Him for being someone we don’t approve of.  We declare, in our tiny finiteness, “you are doing it wrong!”  What fools we are.

And yet He is gracious.  And yet He is patient.  He knows what we are made of – He knows we are but dust and that our lives are like a breath.  And yet He loves us so much that He sacrificed all, that we, we tiny finite beings, could know Him.  In His incomprehensible love and care for us, He set His image in our beings.  He provided the means for us to know Him and dwell with Him for all eternity because He bore the ravaging pain of losing His Son.  Who is this God?  Who is this One that would descend down so low?  Who can believe that this wondrous God would stoop so low so as to become one of us?  Who can imagine that He would become, Emmanuel, God with us?!  Isn’t it just out of this world that He saw the stinking rotting flesh of His creation and reached out and put His hand there on our wounds, on our disease.  He did not stay far off, on His heavenly throne – no, this is the God who came down to us.  He looks me in the eye and He feels the weight of my pain.  He sees the sorrow in my eyes and takes it upon Himself – that He might relieve me of it and that He might love me more because He has known my sorrows.  I ask again, who is this God that does these things?  This is my God!  This is my Father.  This is the one who calls me out on the waves in the darkness.  This is the voice inviting me into the darkness.  He invites, He entreats me to trust Him.  I bow my knee.  I say yes.  Over and over I must submit to Him.  It is contrary to my flesh, but through the death He declares comes the life He promises!  Who is this God?  He is not someone we created, for we would never ever come up with such a plan.  This is the creator God.  This is the God that as He allows me to see Him more and more, I swoon.  As I read about hematopietic stem cells and I feel my intelligence failing me, I swoon.  I grin.  I laugh.  I say, who are you God?  I say, “Look at you.”  I shout, “check you out God!”  This God is my Father and I take His hand in the darkness.  This is the God whose ways are not our ways.  I cannot get over His extravagant beauty.  Psalm 34 says that, “that those who look to Him are radiant.”  I turn my face.  I turn and I close my eyes, my neck stretched upward and I feel the warmth of His glory.

The next part of 2 Corinthians, after the part about being hard pressed on every side but not crushed, is this, oh these wondrous and mysterious words:

“We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.  For we who are alive are always being given over to death for Jesus’ sake, so that his life may be revealed in our mortal body.  So then, death is at work in us, but life is at work in you.  It is written: “I believed; therefore I have spoken.” With that same spirit of faith we also believe and therefore speak, because we know that the one who raised the Lord Jesus from the dead will also raise us with Jesus and present us with you in his presence.  All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God.  Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day.  For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all.  So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal.”

7 responses »

  1. Beautiful and horrible. What a marvelous description of our God, of our need, of the pain and the glory. And I think of the “light and momentary,” and I’m humbled but angry. It doesn’t feel light. It doesn’t feel momentary. I yearn for the day when we get to see the ending, to delight in what God wrought in His infinity. I will pray wisdom for you as you make decisions, for you to draw as much of your daughter in as possible, for her demeanor to be a blessing, for strength and peace to be yours in the darkness of this valley.

  2. Dearest Jai, How beautifully full of majestic truth u have written. The Lord has reached beyo d your soul and left His heart an love, wisfom and understanding… A degree only GREAT suffering can achieve. Its the stuff sweating dropz of blood is made of. The LION OF JUDAH GOES OUT AHEAD OF YOU IN THIS BATTLE…. REST SWEETONE HE HAS YOUR FRONT AN BACK. REST IN HIZ WILL BE DONE AS IT IS IN HEAVEN. HE DOES TURN BAD TO GOOD JUST KEEP YOUD EYES ON HIM… AND PRAY DAILY IN HIS SPIRIT. MY PRAYERS ARE CONSTANTLY GOING UP TO THE Alter of Incence… Of His People. My love and care sister joette’. Have a peacefilled night. 🙂

  3. Jai, you are amazing in how you have come to understand the workings of AML; what is going on in her bone marrow, how the drugs work, all of that! I think I would be just like that, wanting to know the scientific details of what is going on. I miss seeing you at Dr. O’s office. I miss Allistaire’s precious, little self. I am praying for you – for HER! Sure wish I could give you a big hug. I’m so glad the RSV is gone. I’ll pray for no more infections. Thank you for your writing. God loves you all and knows what’s best – “who can know the mind of God?”
    In His love, Lee Manning

  4. Dear lovey,
    jai, hi sweets I just wanted to apologize for something I said on my first text to you that I told you about my cancer fight., I said the words I know meaning I know about fighting cancer and it sound like I was saying I know was like to have a child so very ill. I just wanted to say I have no idea what it’s like and I hope I never have to mine are older in the forties in late 30’s but losing a child is still the same and I couldn’t bear it and I am so, proud of you your mother must be so proud of you that you’re holding up so well um in doing the very best you possibly could do and be such a witness for the Lord I just am so amazed at how much your writings r licting my spirits with tears down my face. I know in my spirit today. This story will have a good ending.,, Jai I’m not very good at texting because of my hands but I wanted to say that the Lord reminded me the scripture talks about only worry about the cares of today that tomorrows take care of themselves, Matthew i think um just think on that just think about today’s worries hon, don’t stress the extra. I love you like I feel like I know you. Hugs joette

  5. Jai – I treasure your writings!! The kind of deep truths you write about are truly only understood through intense pain and suffering. I love that “inwardly we are being renewed day by day!” Precious Jesus we trust You with Allistaire.

  6. Your raw honesty and deep love for Jesus draws me to pray often for your family. Perhaps it’s because you’re so transparent on your blog, or the fact that you and I are both friends with Emily, or your precious Allistaire is four months younger than my Emery, or because we both love Jesus…no matter what it is, The Lord burdens my heart and beckons me to pray for your family often. Many times a day. Randomly.

    My heart aches for the desire to see Allistaire healed. The pain of potentially losing your daughter to be lifted from your shoulders as well as Sten’s. And through persistently praying for these desires, The Lord reminds me, I. Am. Faithful.

    He is faithful. You are loved. You are his. Amen.

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