Monthly Archives: March 2013

Speedy Wahoooooooo!


IMG_1822IMG_1823This is going to be a really quick post because I don’t have a lot of time but I don’t want to keep the good news from you:

Yesterday and today there are ZERO blasts in Allistaire’s blood!

Her ANC has fallen back to zero as well after Wednesday being 22 and yesterday being 16 – more good news that the chemo is working for what we can tell on the outside!

At 9:30 this morning, Allistaire finished up her last dose of Plerixafor which again, is going into the marrow to release the cancerous stem cells into her peripheral blood so they can be more accessible to the chemo.  The stem cells are the true bad guys, as they are the origin of the blasts.  So we’re not just lookin’ for dead blasts here people, we want the Godfather(s) taken down!

Tonight, or more precisely in the wee hours of Saturday, at 1 am, Allistaire will receive her last dose of Cytarabine for this round.  This means that once this last chemo is in, we must wait, not so much for counts to drop since they are already at bottom, but for the eventual rise of her counts which will hopefully only contain healthy cells.

Dr. Pollard told me yesterday that we are being moved to the Bone Marrow Transplant (BMT) team as of next Friday, April 5th.  Of course we have no way of knowing if Allistaire will be in remission, but a lot has to be planned and steps taken with the idea that she will be so that everything would be set for her to have her transplant if she is in remission.  True remission is again considered .1% or less blasts in the marrow as determined by flow cytometry, but because of Allistaire’s very high-risk status, they will “take her to transplant,” as they say, if she is in morphologic remission which means 5% or less blasts as seen under the microscope.  Of course, we are all hoping for the lowest numbers possible in order to give her the best shot at a successful transplant.  They are still planning on going with the cord blood that they have reserved for Allistaire, as the stem cell source.  Time is of essence!  Dr. Pollard also mentioned in passing, that they will be giving her the most severe “conditioning,” (chemo and radiation) they have available.  Scary and I didn’t feel ready to ask what that really means.  But, I guess it is clear that they are going to throw everything they have at her cancer, this mindless beast that just wants to perpetuate itself to the utter disregard of her wellbeing.

But today we are here – today we are alive.  Last night Allistaire ate an entire piece of cheese pizza from our favorite pizza joint, Pagliaccis.  This year marks 20 years of me consuming their tasty pizza!  I can hardly believe that it has been 20 years since I was a wee freshman in college at the University of Washington.  The days where I would skip Greek class to meet my boyfriend under the Monkey Tail tree and go get slices of Pagliaccis seems far off.  Every night in the hospital I sleep under the comforter that is also 20 years old.  Who knew that it’s mauve and forest green plaid would one day keep me warm sleeping in a hospital with my little girl who’s fighting cancer.  Strange how one point in your life ends up meeting up with another point in your life, in ways you could never have imagined.  Kinda fun and kinda overwhelming.  Probably best we don’t know what the future holds.  We are not equipped to deal with so much.  Jesus was so right when he said that we should not worry about tomorrow because each day has enough trouble of its own.  And, as I am still working to learn, fixating on the days to come can rob you of the joy right in front of your face.  Eat the manna.  Enjoy the day.  Take stock of what riches are laid before you.  Dive in, consume it, relish in it.  Sit with belly full, satisfied, content.  And then do the same tomorrow.IMG_1838IMG_1839IMG_1843IMG_1844



IMG_1799IMG_1801IMG_1800Over and over throughout the day I curled the curve of my body around Allistaire, pulling her in close to me, arms wrapped round her and face nuzzled into her neck and hair, murmuring over and over that it would be okay.  And still they came, people entering the room inciting fear and causing pain.  Needle in the hand, blood pressure cuff constricting, cold saline entering the vein, yucky medicine forced down her throat, eyes pulled open for drops, ceaseless harassment.  Over and over, I stroked the hair off her sweaty forehead and told her it would be okay.  On and on she cried and moaned and whimpered and cried for it to stop.  And yet, I let them.  Over and over I allowed them to come in – I permitted the very thing Allistaire fought against and cried out, pleading for it to end.  And I allowed them in – I permitted them to take the blood.  Over and over I told her it would be okay.

Contradiction?  Hypocrisy?

Did it hurt Allistaire?  Yes.  Did it absolutely scare her?  Yes.

I allowed it and I said it would be okay.

Allistaire is sick and her sickness may kill her.  I will continue to allow them to come in and I will continue to allow what causes her pain and what terrifies her – because I love her, because she is precious to me, because she must endure this pain if she is to have a shot at living.  And I endure the pain with her.  I pull her in as close as our two bodies can get.  I hold her trembling hand and feel her rapid heartbeat.  I love her beyond what any words can convey and my love propels me to allow harm done to her.  Why?  Because I have perspective.  I know things Allistaire has no comprehension of.  I know that the bones of her body are the dwelling places of blood stem cells that have mutated and will never mature and will replicate their broken selves preventing the healthy cells that sustain her life from thriving.  I know that the pain she endures in these moments is nothing compared to the pain of her death and nothing compared to the worth of her life.  I see beyond the moment which consumes Allistaire’s vision.  I love her and I allow pain and fear.  These are not contradictory.  They are simply not the entire picture.  There is another part of the equation, the part that absolutely and utterly changes the nature of the pain.  I love her and I allow pain and fear because in the end, I am hopeful that she will be healed of this monster so imbedded in her flesh.

Her blood, that very substance that should be supplying her life, is instead, giving rise to death.  So her marrow, the source of her life blood, must be put to death, in order that new marrow, life-giving marrow, can take the place of her diseased marrow.  It will not due to temporarily wipe out her marrow, eventually it will have to be utterly destroyed or death will continue to rise up.  No, a much greater destruction must occur in Allistaire.  Myeloablation – the complete destruction of her marrow must take place to at last kill the monster of her cancer.  But annihilated marrow is only half the equation.  She must also receive new marrow – stem cells that can produce the blood cells she need for life.  Without replacement marrow, she would die regardless.

Have you ever wondered why we humans procreate the way we do?  Why don’t we just divide like gooey amoebas?  Why do we need a man and a woman when we could just split in half and make another one of us?  I have a much fuller theory on this, but in sum, I believe God created man and woman and thus family for the sake of a picture.  God could have enabled us procreate in any number of ways but He saw fit to show us the love of a man and a woman that we might better know His love for us – this love that is relentless and unconditional and wooing.  He gave us the picture of a father and a mother and what it is to be a child and what it is to have a child.  He did this I believe that we might know Him better – know His love for us in the most tangible of ways as we love one another and as we cradle our child.

We resist pain.  We thrash around and cry out to God.  At times we wonder how a loving God would allow such pain to continue to enter into our life.  If He can stop it, why doesn’t He?  As our eyes well with tears and we cannot see Him at our side, we demand to know how this could be okay?  We call Him hypocrite and we distrust His love.  We see what is happening through the scope of our miniscule view. We do know pain.  It is shockingly and numbingly real to us.  But.  It is not all that is real.  Our Father is curled up by our side, arms circling us, stroking our fear laden foreheads and telling us it will be okay.

And why and how will it be okay?  There must be death for life to rise up.  Like Allistaire’s diseased marrow that requires utter and complete death, so we must die to our sinful selves.  Like Allistaire, we need something to replace that which is too diseased to sustain our life.  We need Christ.  We need His death to be our death.  We need His resurrection life to be our life.  We need, like Christ, who knew the terrifying silence of God, to trust, that seeming silence and that a seeming turned face, are not the end of the story.  We feel ourselves groping in the dark, calling out for the Lord, wondering why He would allow this wretchedness.  His mercies are new every morning and He will raise us up like He did Christ – with the very same power that He exerted when He raised Christ from the dead – that is the power at work in our lives to bring us through the darkness of death, in all its myriad forms, into the light of truest life.

I murmur to Allistaire that it will be okay.  I allow the pain, not because I have turned my back on my wee love, but because I do love her.  I invite in the death that will destroy, that there might be room and foundation for new life.  I cry out to my Father in the darkness.  I listen to His Word and I put my hope in Him – the author and perfecter of my faith.

We are half way through these days of chemo.  On Monday, prior to chemo, Allistaire’s absolute blast count was 8976.  Yesterday it was 3024 and today it was 418.  When the doctor felt Allistaire’s back and her lymph node she felt they were reduced in size to almost nothing.  Yesterday brought the news that a second RSV test confirmed zero presence of the virus in her body.  Today she has an ANC (Absolute Neutrophil Count) of 22 after two weeks at zero.  We’re not entirely sure this is the case, but the doctor is hopeful this is a result of there being a bit of clearing of the cancer cells in her marrow which has allowed a few healthy cells to grow.  I would anticipate it going back down to zero as the chemo continues to take effect.  Today Allistaire drank an entire pint of milk – the first liquid she has been willing to consume in days.  She also ate a fair amount of macaroni and cheese.  In the last three days she has only eaten about 20 tortilla chips.  What can I say?  Wahoooooooo! So many great things!  Praise the Lord and may He continue to provide!

Allistaire herself has been laying pretty low.  She hasn’t walked in four days and has pretty much been in bed watching movies and little else.  But today she seems to have a bit more energy and has been very sweet and quite irresistible.  We took a few walks around the Unit to the, “Pizza Room,” as Allistaire calls the little parent kitchenette.  She sported her pink cowgirl boots and her sweet pink cowgirl hat.  She received many compliments to which she mostly huffed and growled.  So, she’s sweet to me, but not really anyone else as of yet. IMG_1814 IMG_1813 IMG_1812 IMG_1811 IMG_1809 IMG_1808 IMG_1807

Let’s go Plerixafor, Let’s GO!!! (think cheerleaders)


Allistaire with PapaIMG_0110

photo-11The top picture is from December 17, 2011 just days after beginning chemo for the very first time.  My pops, Terry, is holding her.  The second pic is from exactly one year ago when we got to go home to our old house in Kent, Washington, after getting chemo for the third round and waiting for counts to drop and rebound.  The last one is from today.

The room has taken on a soft lulling…steady swish of the IV pump infusing fluids, the quiet whirring as though of gentle gears pushing the chemo into her line.  The ventilation system like a background wind in the trees that never ceases, with an overlay of the relaxation music from the 3 CD pack I purchased at Target, now nearly sixteen months ago.

Today has been a hard day for Allistaire.  She awakened to having thick cream put on the tops of both hands and the inside of both arms, then wrapped with Press ‘n’ Seal and wound with Coban.  Heating pads were placed on all four places and already she was tired.  Next came the IV team who succeeded the first time in placing an IV in Allistaire’s left hand.  Her little cries of pain and for help were adorable and pitiful at the same time.  Next came an infusion of Zofran to help with nausea.  Blood was drawn from her Hickman catheter to get base line tests for the clinical study.  At 9am the Plerixafor, in whom we are placing great hope, began to flow through the IV in her hand.  As the clinical study stipulates, within five minutes of the Plerixafor infusion completing, more blood was drawn.  This was done again at 30 minutes, 1 hour and 4 hours post infusion.  In the meantime Allistaire had me trying to force granola bar and Miralax infused apple juice into her and the CNA trying to get vitals and a weight for her.  In came the guy who cleaned the room and the child life specialist.  At rounds I counted at least eight people standing in a semi-circle around the bed.  Her fluids were bumped up to help deal with tumor lysis and more labs were drawn for the study and for a variety of lab levels they look at to track tumor lysis.  Then it was time for Allopurinol to reduce uric acid levels resulting from tumor lysis and a dose of eye drops to minimize side effects from her chemo, Cytarabine.  At long last it was 1pm and two nurses in special blue gowns and protective eyewear, came in together to hang her chemo, which runs for an hour.  Etoposide follows for an hour with vitals at the beginning and half way through.

Throughout all of this Allistaire has seemed very tired today.  She has not gotten out of her bed and numerous times said she was ready for her nap.  There has been a lot of crying and quaking in fear.  It seems too that a number of the blood draws have bothered her; likely due to the cold saline that is part of the process, which she can feel going into her line and may taste in her mouth.

Today has also brought the sweet thoughtfulness of others including a gift from Caden’s mom, Pam, and gifts from little man Liv, and his mom Irena.  The latter are our newest friends here and are here for chemo because of Liv’s relapsed ALL (Acute Lymphoid Leukemia).  It is so humbling and heart warming to have those close at hand acknowledge the significance of today – another try, another gift.  No one thinks they want chemo until they need it, until this poison is their only shot at living.  We invite in the poison and ask it to use its destructive powers for good.  I thank God this day for chemotherapy – for a means to destroy the destroyer.  Every single day that we open our eyes to one more day of life is pure gift.  We tend to have eyes that fixate on what we keenly feel is lacking, to the great disregard of our absurd abundance.

This is the day that the Lord has made.  Let us rejoice and be glad in it!

The night will be pretty busy as well.  At 8pm Allistaire had vitals, followed by Allopurinal, Fluconozole and eye drops at 9pm.  Her antibiotic, Cephapime, will run from 10-10:30pm.  At 12:30, she will again get eye drops, Zofran and vitals.  The next dose of the chemo, Cytarabine, will run from 1-2am.  Four am brings eye drops, vitals, lab draws and ethanol locks for her lines.  By 6am it’s already time for Cephapime again.  Then tomorrow starts with Zofran for nausea and Plerixafor at 9am.  All of the extra lab draws of today will only be repeated on Friday.

As I said, Allistaire has had very, very low energy today.  She never got out of her bed and mostly laid flat. She only ate half of a granola bar all day and had maybe 8 oz of fluid.  She definitely seems sick – as though she has the flu.  The leukemic blasts in her blood were about 4800 yesterday and nearly doubled today to around 8900.  It is hard to see her so down, but on the other hand, I have to say this is the first time she has ever truly acted sick in all the time she has been treated for her cancer.  In fact, Allistaire has never thrown up.  Amazing and something I am SO thankful for.

Your prayers, spoken to our Lord and written to us, continue to encourage me and hold us aloft.  Thank you too for all the sweet cards, drawings from your kids, gifts and photos.  We do not at all feel alone in this – on the contrary, I am continually amazed at the beauty and bounty of the body of Christ and all those who seek to love us through this.

Here we go again…


IMG_1759Today we were able to take Allistaire out on a four-hour pass.  We left the hospital at 10am and Allistaire was already tired.  She kept asking to go to the playground.  We went to Ravenna park up the road.  Quite a number of times we would go to this park after church back in the day and I would nurse Allistaire as Sten and Solveig would go frolic on the playground.  How strange today to hold Allistaire’s hand as she so tentatively walked the distance to the playground.  She seemed excited about the slide but the journey up the stairs to the slide seemed monumental to her.  She wanted to hold my hand and took each step using me for support.  One trip down the slide and she was done.  However, she was quite content to have Grandpa Lowell, Sten and I push her on the swing for a long time.  I hadn’t really thought through what our time out of the hospital would be like, but I think unconsciously I had assumed taking Allistaire out of the hospital would be like having her old self back.  It was quite sobering to see how weak she was and to see her in contrast to the other kids at the park.IMG_1764 IMG_1762

After the park we went and walked through the Quad at the University of Washington where I went to under-grad and grad school – my home for five years.  The cherry trees were all nearly bloomed out.  It is such a beautiful and inspiring place.  Next we went to the Ballard Locks and enjoyed watching several boats go through the Locks – somehow always a delightful sight.  It was quite a cold morning, however, and Allistaire was pretty unhappy.  Allistaire requested chocolate milk and french fries for lunch so that’s what she got – that and a few cheeseburger sliders.  She ate pretty well, but was so tired from our outing that she fell asleep on the way back to the hospital.IMG_1785 IMG_1784 IMG_1788 IMG_1787

Once Allistaire had her IV antibiotic and was down for her nap, Sten came on over to the Ron Don and I packed up everything I’ll need for the week and cleaned the room in anticipation of room checks later in the week.  We finished up our time together walking the Burke Gilman trail for about an hour in the beautiful afternoon sun.  It is such a treasure to have such beauty so close and accessible.  We both had “Sunday Night Depression,” as we’ve always called it.  The reality that we would be apart once again and the unknown with Allistaire weighs heavy and sort of casts everything in a shade of sadness.IMG_1791

Tomorrow was supposed to be day 26 of her first round since relapse, rather it will be Day 1 of our next round of chemo.  Oh how we pray this Plerixafor, Cytarabine and Etoposide will do their jobs!  At 8am tomorrow morning IV Team will come and place a peripheral IV in Allistaire for her to receive the infusion of Plerixafor.  For some reason the study requires the drug go in through a separate line from where blood draws are taken which will be through her Hickman Line.  Though she will have a dose of Plerixafor each morning for five days, I was told that she will have to have the IV for just the first and last doses.  Each day she will also have a 1pm infusion of Cytarabine for one hour followed by a one hour infusion of Etoposide at 2pm.  This regimen will continue for five days, Monday 3/25 through Friday, 3/29.  In addition to praying for the Plerixafor to root out all those nasty cancer stem cells from her marrow and the chemo to meet the bad guys with sufficiently destructive powers, please pray for the protection of Allistaire’s organs and especially her heart.  It looks from her echocardiogram that she may have some damage since the last round of chemo.  Her ejection fraction has gone down by some degree.  Needless to say, we need all of her organs to remain as healthy as possible for whatever may come next.

This next picture is a bit of a hard one, but it shows our reality – the biopsy on Allistaire’s back and lots of pokes for bone marrow and intrathecal chemo.  But we won’t end there.  We’ll end with some smiles because that’s who we’re fighting for 🙂IMG_1744IMG_1758 IMG_1747 IMG_1725

Bright Spots


IMG_0625Okay, enough already of the doom and gloom huh?  Monday was the darkest day of my life thus far, but four days later, life feels a bit lighter.  Allistaire is much more joyful and has lots of goofy sweet smiles and giggles.  During rounds yesterday, Sten held Allistaire and I stood on the opposite side of the circle with all the various doctors standing in between.  “From a Hematology perspective….from an oncology perspective…from a FEN (Fluids, Electrolytes, Nutrition) perspective…,” on and on they go and right in the middle of the resident going through their shpeel, Allistaire says, “Mommy, I love you.”  I wish you could hear her voice and see her face and see the looks on the doctor’s faces.  It was too funny and so sweet.

In addition to Allistaire’s improved disposition, Sten and I have confirmed our decision to enroll Allistaire in the clinical study that will use Plerixafor in combination with high-dose Cytarabine and Etoposide.  We were so happy to hear that her spinal fluid is still clean!  She will begin chemo on Monday.  Please continue to pray for protection against infection, minimal side effects and utter annihilation of cancer cells!

This weekend should be pretty chill.  Sten and I are looking forward to having some of his old friends/coworkers from Freestone (the company he worked for in Seattle) stop by for a visit.  Then Sten and I plan to head out for a few hours together.  Tomorrow we will be given a four-hour pass where we can take Allistaire outside and have some fun.  Because she has a zero ANC still, we will avoid people and probably go to a park for Allistaire to play and maybe have a picnic lunch.  It’s supposed to be sunny and nearly 60 degrees.

I’ve a few other joys in the last week or so that I haven’t had a chance to relay until now.  Just over a week ago Solveig was out for a visit and she and I had the opportunity to spend most of the day together.  We had an incredible time at the zoo and saw some amazing creatures including a father and daughter orangutans playing hide-n-seek with each other, an amazing bird show with an eagle, vulture, barn owl and several falcons, and a mighty grizzly bear duo looking to capture some fish.  Mostly it was just a joy to run around with Solveig and hold her hand and watch her eyes as she talks.

Lastly, my mom and I had a lovely day together last Sunday.  The best part is that in my laziness, I just threw on my old grungy green fleece, some jeans and my old green Asics shoes.  Then I look at mom and see that she’s wearing a green jacket and green shoes.  I could change but I don’t feel like thinking about clothes and I accept the reality that we are going to look like total dorks walking around together.  For breakfast we went to a bagel shop.  I saw the green bagels but it didn’t occur to me the reason for their odd color.  As we paid for the bagels, the man behind the counter exclaimed that he loved all our green for St. Patrick’s Day.  “It’s St.Patrick’s Day?”  I asked.  Who knew?  We went from looking ridiculous together, to super festive.  I have no idea what’s going on in the world or what the date is.  Everything is counted in relation to when chemo started, or how long we’ve been inpatient (which has been 27 days now).  I just found out yesterday that Easter is not far off.  I had no clue.

I really want to thank you all for so many prayers, so many cards and stickers and pictures and sweet gifts and texts and phone calls!  We feel unbelievably loved and supported!  Please know that it is a joy to receive all you are giving and please, please, do not take my utter lack of response to be ingratitude or anything of the like.  I am trying to keep track of everything and will eventually get to writing thank you cards.  And know, that I will likely either not return your phone calls or return them very late, hearing your voice truly lighten’s my day.  It doesn’t matter so much what you say, just hearing your voice and your attempts to fumble around for words conveys immense love and it helps buoy me up and carry us along these challenging days.  Much love to you all!
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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.”

Echo of Heart


IMG_1692Can we really already be out of options?  Is this really all we’ve got?
I feel like I’ve been told three times my child has cancer.  The first time was terrifying – we had no idea what we were in for but we were prepared for whatever we had to do.  The second time we knew what lay in store but our options were far diminished and came at a much greater cost.  Yesterday evening when Dr. Chow told me that the blasts in Allistaire’s blood were leukemic, I simply nodded.  We’ve given her our big guns chemo.  The only options left are experimental.  She cannot have an active infection.  Clinical studies may have limitations regarding the cancer in her skin.  Dwindling roads, narrowing, constricting spaces.  Today was a choking down of the blank future before us.  My heart kept tearing, like a carcass being torn by a wild animal that is only set to devour, unconcerned with the life blood of it’s prey, spilling.  The bathroom was my only private sanctuary where the sobs kept coming.
All I wanted to do was soak in Allistaire.  I did not want to waste time with any other activity.  Yet at the very moment I yearned to come close to my beloved and delight in her, she raged and raged.  Allistaire thrashed and roared like a wild, insane animal today.  She cried and screamed and grabbed at her hair, her legs, her arms.  She seemed utterly out of her mind.  I could not stop the tears.  She seemed already gone.  In the midst of the stormy day the Lord provided a number of kind faces and voices and hugs.When at last Allistaire was still beside me this afternoon and I starred at the cardboard birds hanging from the ceiling, I thought how lovely to have 2 hours where no one comes in the room.  What coveted quiet.  I let my mind wander and pick scenes from days gone by.  I watched Allistaire in my mind, running through our house, pulling the sled, laughing, squealing.  Silent, hot tears streamed.  I felt the ache of regret for the many times I was impatient with her, unkind and demanding; wishing I’d dealt with her more gently.  Times sweet and times broken.
Near the end of her two-hours Ribavirin dose, Dr. England, the Infectious Disease doctor stopped by to discuss the plan for Allistaire regarding her RSV infection.  Her goal is to have most of the virus gone by the end of the 15 doses which will be Wednesday night.  In addition she doesn’t want Allistaire to be “sick.”  I asked her what she meant by sick, given that the virus will be in her system for weeks. Apparently she should be off oxygen, which fortunately has never been necessary for Allistaire.  She wants her oxygen saturation to be over 92% and ideally as close to 100% as possible.  It has remained in the high 90s much to my joy.  Also, she doesn’t want to see any progression of symptoms.  So far she has only had a slight cough and a tiny bit of a runny nose here and there and things have certainly not progressed.  Like the streptococcus infection, RSV commonly results in being in the ICU for AML patients.  I feel extremely blessed with how well Allistaire’s body is holding up.  To use Dr. Ho’s words, “she has a very strong underlying immune system.”  Thank you Father!
Dr. Ho also came by to let me know that Dr. Pollard is planning on meeting with me tomorrow to discuss a specific clinical study she has in mind for Allistaire.  She is in communication with the clinical study chair and it has been determined that a CT scan will be necessary to determine whether or not the RSV infection is in her lungs.  If the CT scan confirms that she only has upper RSV infection, her RSV will not prevent her from being eligible.  Because her bone marrow test is scheduled tomorrow at 9:30am, and this along with a CT scan requires sedation, they will wait until later in the week or the beginning of next week to complete the CT scan.  I do not have any details about the clinical study and don’t know at this point if there are other elegbility requirements in question.  Results from Allistaire’s bone marrow test may come back as early as tomorrow afternoon though more likely on Wednesday.  Sten and I will meet with Dr. Pollard on Thursday to continue the discussion regarding what options are available for Allistaire.At last, this news of even a possibility, it was a bright spot in the day; the sort of ray of light in an angry cloudy sky.  What a gift.  I have learned along this journey that every single step forward is absolute, literal gift – because you might easily not have it.  Lungs that breathe.  A heart to pump.  Kidneys and a liver and blood vessels and blood cells – on and on it goes. Gift.  Mercy.  Grace.
Another dear gift I received today, was the opportunity to read the words of Rachel – mother of Olivia.  I met Rachel and Olivia when we were first here in December of 2011.  Olivia, who is only a few months older than Allistaire, had just had a transplant.  Rachel, with her cute red hair, super short from having been shaved, she and I marveled at how similar the two girls were.  Today I marveled at how similar Rachel’s heart is to mine.  It is a gift to have another voice, articulate the same experience, joys and woes.  With Rachel’s permission, I share with you her heart, that so well conveys my own.  Her blog is
“Social media sometimes makes stark the contrast between the world I once knew and the life I know now. And for that reason, I often avoid it.Because everyone else’s problems will pale in comparison to the image of the mother cradling her dying child. The child she is watching suffer through a lingering and painful death. The child she cannot not save. Soon, she will die a little too, though her breath will betray her. And then there is so and so lamenting frivolous things; colds, messes, prices, commutes. This applies to me too, as I struggle with the idea of creating some space between myself and Olivia – ie: getting her back into her own bed – as grieving mothers sleep where their child once slept just to feel close to them again. And I feel ridiculous. It seems absurd that these fates can exist in the same time and space. That a dear friend can be tasked with placing her child’s ashes in an urn while others play under a sun whose warmth some will never know.

Reality is seeing the school bus drive past our house and then wondering if Olivia will even reach school age. It is living life in monthly increments, enjoying our longest stretch with no lab work since diagnosis, but also knowing that the next time a needle slides into her arm, that vial of blood and the hours that follow might literally contain my greatest fears realized.

Reality is looking in the mirror and seeing a hurt that has aged me beyond my years. Knowing that time can not erase one iota of the pain as it merely settles deeper in my bones. After 33 years I often do not recognize myself. I feel as though, at all times, I am waiting for something to happen.

Reality can be so very hard.

When the unthinkable happens and the grief is greater and the burdens somehow heavier than before. If you’ve ever experienced a traumatic life changing event, then you know what I mean. There is the before and the after. These defining moments, these deep cuts, they are incapable of healing. They may scar over as time marches away with what once mercilessly ravaged or they may be ripped fresh as that burden of fear becomes realized in a surreal yet familiar sort of horror.

As they have for Olivia’s little friend from the hospital. Her friend, just a few months younger, who sucks her thumb and loves her stuffed dog. Sweet Allistaire’s leukemia is back. It has infiltrated her skin. Her skin. As I read the words written by her grieving mother, I knew what seemed familiar, the sinking and despair; utter disbelief that this should be life for anyone, let alone a not yet 3 year old. The first cut is deep but anyone who knows cancer knows that the second cut is deeper still; and though that fear weighs heavy on my own heart, I do not personally know it. I do not ever want to know it. I simply ache as Allistaire and her family must begin again. My own head spinning at the quickness with which normal routines and comforts cease and life becomes a moment to moment affair; some days just struggling to get through. Grasping. It is all so terribly unfair. Allistaire’s mother is a woman of great faith. She is grace exemplified. I really do admire her and have found her chronicling of their experience to be inspiring. Her words have scraped me off of the bottom on more than one occasion, shining perspective and comfort in the doldrums of disease and treatment and recovery. How someone in the midst of her own confusion and sadness can lift others up…..well, that is a gift.

Please keep them in prayer. Please pray that the decisions made by Allistaire’s doctors are the decisions that will lead to her cure. Pray for peace and light in the valley.

As her mother said, it will be longer and harder this time. The search for a bone marrow donor has commenced. I ask that any eligible person reading this who has not yet registered to become a donor, please do so. You can register with DKMS or Be The Match. It’s easy and free to you. The potential to save a life is very, very real.

This is reality for so many. This and more.

I waffle between wanting to bury my head in the sand and needing to face my fears and worries head on. Ultimately hiding from reality would be like hiding away bits and pieces of Olivia; denying her truth and diminishing the gravity of her experience. This part of who she is. This part of who we all are. The problems swept under the rug eventually surface and they are only messier when they do. It would also make a gigantic hypocrite out of me as I have pleaded to you all to not turn the other cheek, to be brave enough to stand with us. To fight for these kids. To throw money our way in the name of what some say is impossible. And so many that could have turned away from us did not and have not.

So I will keep looking and reading and knowing that though these children hold the enormity of my worry and my fears they also hold my hopes and my dreams. Reality at its most harsh and relentless set out before our most innocent.

As my head has been aching, all day long, these past few days, I realize how much hurting and sadness I am carrying around for this family. And for my own family. My own self. Perhaps it is because I know them, sort of. They are not just pictures or words on a screen. They could be us, as we all lived out this reality behind those same closed doors. I knew Allistaire briefly before chemo took her blonde curls; in that small space between diagnosis and treatment, when everything is spinning out of control. I wondered at her hair when I first saw her in the halls. Hair kind of makes you stand out in an oncology ward y’know? Was she new? Had she relapsed? Was she just visiting a sibling? She was the only other child close to Olivia’s age that I had seen in a while – most others were much younger or older or were living in isolation. Her mother and I marveled at the many similarities between our two girls; mannerisms, appearance, diagnoses. I suppose we may have resembled a frightening glimpse at their road ahead. When bald heads and feeding tubes and IV poles are still unfamiliar things. I remember trying to seem reassuring; explaining that the little ones often do so well with chemo, just as Olivia, sitting happily on her trike on her transplant day, vomited all over the place. Perhaps it is my selfishness, or humanness, that makes their reality seem a more viable possibility down our own road. This thing you cannot run or hide from, no matter how faithful or full of grace.

I have been reminded these past few days that even as reality can become quickly and nearly unbearable, “faith looks up”.That even as the path becomes so uncertain, there is Grace abundant that holds to no earthly bounds. There is Glory to be proclaimed. Beauty in the hurting.

There is hope.

You need only to look up and be reminded that this reality is fleeting.

Earlier today I unpacked a daily devotional that I used to keep next to my bed. I had the following page bookmarked. I guess I needed to see it again on this day.”

TRUST ME, and don’t be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.

When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities . Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yesto the ways I work in your life. Trust Me, and don’t be afraid.”

~Sarah Young, Jesus Calling

Deeper Darkness


IMG_1660IMG_1678I will have to keep this short.  Allistaire just fell asleep after yet another time of having a masked forced down on her face while she writhed and screamed and flailed her hands.  She HAS to get this Ribavirin.  She has to get rid of this virus.  Absolutely nothing can move forward without this RSV being over.  Her ANC continues at zero.

While I was thankful that Allistaire’s absolute blast level had lowered the last two days, the pathology reports came back confirming that the blasts are leukemic.  This means she is absolutely not in remission and on Tuesday she will have a bone marrow biopsy to see how much is in her marrow and a lumbar puncture to see if it’s in her spinal fluid.

Because of the RSV, her transplant was already automatically delayed 3-4 weeks which would necessitate more chemo.  Now we are desperate for chemo – any chemo that will work against this beast.  The attending doctor on service said that her ability to clear these infections is imperative in order to give her even the opportunity to be on a clinical study, should there be one available to her.  Oh, I just found out as well this afternoon, that the fever from early Saturday morning, and the subsequent blood cultures drawn, showed she has a blood infection from the bacteria, Streptococcus.  Fortunately, now that she is on two antibiotics, Cefepime and Vancomycin, she shouldn’t have too much trouble getting over this specific bacterial infection.

The one encouragement, is that she actually still seems in relatively good health – relative being the operative word.  Her lungs still sound great and I guess that infections of Streptococcus in AML patients can often lead to an ICU visit when it first hits.  Allistaire has had almost no symptoms of anything.

Sten and I are in horrified amazement that things have turned so fast, despite being told so many times that this can be the case and despite seeing it happen to others.  It is just one of those things that seems impossible but you are watching it happen and participating in it but being outside of it at the same time.  Sten is going to fly in on Wednesday hopefully, instead of Thursday evening as planned.  It will be so good to have him here.  It is hard to be apart and only communicating by phone when a hug is all you want for yourself and are able to give.

On top of all the physical realities for Allistaire, she has been mostly awful to be totally honest.  The last couple of days have been so rough.  She screams and wails until her face turns read and she pounds her fist and flexes her legs.  She absolutely rages.  I oscillate between being gentle, to flat to raging myself, to weeping.  I so want to care gently and kindly for her but she is so upset so much of the time.  It feels like my little sweets is already being taken from me.  The Allistaire of a few days ago seems mostly gone.  Though, I will say, there was about 5 minutes this evening, when she ate 3 chocolate chip cookies my friend Cambria made, and spun and danced and made silly eyes.  It was such a reprieve.  Of course it was followed by her utterly smashing the last remains of a cookie and then throwing a psycho fit when I locked her in her eating chair while I cleaned up.

I am spent.  There is no end in sight.  Harm continues to rise and threaten.  I don’t see light right now.  But I cling with hope to the promises God has given me – secured by the blood – the very life flow of His own child – His own beloved.  I know how much the life of one’s child costs.  This is what God sacrificed to secure His promises for me.  So I sink into those promises.  In my exhaustion and my trembling fear for tomorrow, I hope for what my brother reminded my of tonight – Redemption.  I put my hope in that – that this is not all for naught – that God will redeem it.  Lord hear our prayer.

Oh Blasts!


photo 5 photo 3 photo 2It is amazing how quick one bad thing can seem small when something bigger comes along.  RSV is bad but man, today just straight up got worse.  The doctors came to our room to do their rounds.  They went through their regular routine until, upon getting to Allistaire’s ANC they realized they didn’t have that number yet.  The next thing I know, while I sat on the bed holding Allistaire, all of the doctors huddle around the computer in the hall – the COW to be more precise (computer on wheels).  I looked up at the nurse who stood beside me, “that doesn’t look good,” I say.  She almost imperceptibly nods, her eyes fixed where mine are.

Allistaire’s ANC is zero.  That’s fine.  She has over 1,000 blasts in her blood.  What?  She has NEVER had any blasts since this all began.  Blasts are simply immature cells.  But leukemia cells are blasts because they are immature cells that never go on to become mature.  Unfortunately the microscope cannot tell us what type of blasts these are.  The doctors themselves had just seen the numbers but they offered a few possibilities.  The most obvious and the most concerning is that these blasts are her leukemia, which would mean that not only is she not in remission but that the cancer is on the move.  Another possibility is that these blasts may have been produced by her marrow responding to her RSV infection.  Lastly, the blasts could somehow be related to the expanded cord blood cells she received a week earlier.  The last possibly was pretty quickly ruled out once results from the Chimera blood test were checked, revealing no presence of the expanded cord blood cells still in her blood as of one day ago.  The plan is to watch her blood counts over the next several days and see what the blasts do.  They are scheduling a bone marrow test for Monday or Tuesday so that they can go in and check if the blasts do not go down.  Honestly, it seems both to myself and to Dr. Pollard sort of hard to imagine this is her disease.  We have external evidence of her cancer cells responding the way we have hoped based on the greatly diminished size of the lymph node and the bulge on her back.  Also, with the original relapse amount of blasts in her marrow being only 1.1% it just seems really surprising.  It just seems crazy but it is possible.  Dr. Pollard thought that if it was her disease then she would be in more pain.  Last night she cried some in her sleep, something she almost never does, and today she complained once about her knees hurting and tonight she twice complained about her neck hurting.  I have no idea what to make of this but it is needless to say, immensely disheartening.

As for Allistaire’s RSV, the good news is that her lungs sound really great which means the virus is still only in her sinuses and has not moved into her lungs.  Pneumonia can occur when the virus moves into her lungs.  They did a second nasal swab to test for the specific amount of virus present in her body.  They want this baseline number to compare against the viral numbers after completion of the Ribavirin.  She will have 3 two-hour doses of the anti-viral ribavirin each day for five days.  Tonight her first dose was supposed to begin at 10pm, to hopefully coincide with her bed time.  They gave her Benadryl an hour before hand so that she would hopefully be asleep.  Allistaire was quite afraid of the “tent,” she was going to have to sleep in and certainly not at all willing to sleep with a mask on her face.  It is far preferable for her to wear the mask for maximum effectiveness.  After a bit of a freak out, I decided to and offered to lay next to her on the bed, rather than in the adjacent room joined by a sliding glass door.  I gowned up and was ready with a mask.  Fortunately we were also able to give her IV Ativan to calm her down and get her to sleep.  It is now ten after 11 pm and they are putting on the mask and have just turned on the Ribavirin.  It will run for two hours and then “settle,” in the room for one hour.  Everything is draped in sheets that will be removed afterward.  I think someone will come in and mop the floor as well.  This will all be repeated at 7am this morning and again at 3pm to complete the first day.

Alas, the big blows kept coming.  Sweet Dr. Pollard stopped in to talk about where things stand and what to look ahead to.  Because Allistaire has RSV, she will now have to wait 3 weeks once the virus has cleared her body before she would be allowed to have a transplant.  I think that she has to be a-symptomatic and test negative for the virus for it to be considered as cleared.  I have no idea how long this could take but clearly at least 5 days for the Ribavirin treatment.  RSV can be fatal in transplant.  As a result of this delay, it is now likely that Allistaire will have to have another round of chemo regardless if she were to be in remission.

As you can imagine it was a rough day and it seemed that people did not stop barging in the room either in person or by phone.  An infectious disease doctor, I did not know to expect, pops his head in and asks if it’s a good time.  My face all red and my eyes full of tears, I turn to face him and tell him, “No, it is not a good time.”  But then again, I don’t have the luxury of a good time to cry in this place that offers absolutely no privacy.  So in he comes.  I am so thankful for the amazing number of people who come together to care for my beloved.  Sometimes, though, it feels that you are being barraged, that shrapnel just keeps raining down.

I have sought to truly face the possibility of Allistaire’s death.  I have sought God to help me release my grip on her and hold her open-handed to Him.  It is not hard for me to believe God can heal her.  That belief does not stretch my faith.  The straining and stretching and wrestling and struggle of my faith is to believe in a God who is good and may choose not to heal her – to see a God who would withhold His healing hand as simultaneously perfectly and utterly good.  I cannot possibly know if this is true, but it seems like it would be easier if she were just suddenly taken.  Rather, it seems I must yield tiny bit by tiny bit, day after day, each hour and minute by minute.  It feels excruciating like having a vice slowly but steadily bearing down on you, splitting and severing your flesh.

This battle I find myself in the midst of is truly not a battle against flesh and blood.  I am constantly lulled and drawn into perceiving it this way, however.  How can I not feel that my life hangs as I await the black little numbers on the page, telling me her blood counts, like tea leaves predicting my fate?  You know what song Solveig learned when she was little in Bible Study Fellowship?  “Good morning God.  This is your day.  I am your child.  Show me your way.”  This really is the day that the Lord has made.  He has crafted this day.  He is the sculptor pressing the clay this way and pulling it there.  Right now it looks like no masterpiece I can tell you that.  Today it looks more like a mess, like a hopeless screw up.  As one who loves art projects though, it seems there is always a point in the process where it looks like what your hands are making is just not going to work out – it cannot possibly bear out the beauty of what you had envisioned.  It sometimes takes quite a while to turn out of that low place, but most of the time you eventually get the joy of standing back, looking on what you have done with satisfaction and joy.

What is the Lord up to?  I cannot possibly tell you.  What I have told Him is, ah God…this really doesn’t seem like a good idea, not sure how this helps you look like the good guy.  So I wait.  My soul waits.  My soul waits for the Lord.  I sit here in this day the Lord has created and this night as my body is tired, my head pounds, my shoulder is tight and my heart faint.  I wait for the Lord.  I wait for Him to call the stars out, each by name.  I watch this dark night sky for each star to appear.  I watch as a constellation starts to take form.  The night darkens and the stars come out, one by one, filling in the lines and creating semblance of an image.  Each day goes by; each crafted by God.  Slowly the points of the image piece together, achingly slow, painfully slow the image takes shape.  Have you ever looked at the picture drawn of Orion the Hunter?  You look at the picture and you wonder how those few stars are supposed to depict such a detailed warrior.  It seems to me the picture, the image that God is crafting requires infinitely more points of light that we alone will ever see.  From our vantage point, there is no order, there is no cohesive plan, much less staggering beauty.  We see the handful of stars that supposedly give form to the warrior Orion and we hang our heads, we shake our heads and cynically think it a bit far-fetched to think those stars show a warrior.  What is the Lord up to?  What beauty is He creating?  I cannot possibly tell you.  From here where I stand, there are just a few scattered stars.  But wowzers is that darkness big – that night sky vast – think of all those points of light – think of the scale of what God might be up to.  I have no way to stand back far enough to take in the full view.  I am finite.  He is infinite.  He works with a hundred quadrillion points of light, for one tiny detail in His beautiful creation upon which He is still painstakingly working on.

My soul waits.



IMG_1567IMG_1568Allistaire’s ANC hit zero yesterday!  It may seem a bit twisted to be excited about Allistaire having no functional immune system today.  I do recognize that as she plays with that little soccer ball, rolling it all over the floor, picking it up and over, that who knows what scary stuff is getting on her hands.  The door to her little body is opened wide for whatever little bacteria fellows and virus monsters want to creep or swoop in.  So while I’m certainly not wanting her to get sick, I personally like seeing that fat little zero that shows me chemo kills – it destroys and I hope and pray those pesky cancer cells are no more.  I can tell you that the 2-inch ball that was her lymph node in her arm pit is now about the size of a few peas.  The area on her back where her biopsy was is nearly flat.  In the week after her biopsy which removed the lump as completely as the surgeon was able, a wide bulge under her back grew in only days time.  The new bulge was far larger – probably more like 4 by 3 inches versus the original lump which measured 1 by 2 centimeters when it was originally decided it needed to biopsied.  More about these more external evidences of her cancer in a bit.

At last I have a bit more information about the days ahead.  In the past week I have had to repeatedly adjust my ideas of what was going to happen with Allistaire to the reality of what is planned for her.  The morning of her birthday I called Laurie, the Search Coordinator at SCCA (Seattle Cancer Care Alliance).  I wanted to check in on the progress for the bone marrow search.  Her first statements were that she had “some really nice cord blood units,” for Allistaire.  It felt a bit like heading to the car dealer for a Porsche and being told you could have a really nice Toyota Corolla.  Corollas are nice for some people, but certainly not for you and who in the world can be excited about something that is nowhere near what you were hoping for.  I immediately felt frustrated and annoyed – who cares about cord blood units – those are easy, sitting around in some little freezer somewhere.  Okay, what I really see is the actual umbilical cord sitting as though it had just been chopped off, laying in a safe deposit box sort of thing.  “What about the donor search?” I exclaimed.  First she tells me that their main priority is to look at cord blood which is immediately available so that if the patient needs to move swiftly to transplant, they already have an identified and viable option. “Yeah, yeah, yeah, so what about the donor search?” I exclaimed.  I could not have possibly anticipated the absurdity of what she was about to say.  “Your insurance does not cover the donor search.” Fear.  Anger.  Horror.  Shock.  “What?!”  So it turns out that brilliant Blue Cross Blue Shield of Montana covers the entire cost of the transplant for Allistaire, the procurement of the bone marrow from the donor and the testing costs associated with the “identified donor.”  What this means is that they pay for everything except finding the actual donor.  Laurie, as the Search Coordinator, is able to get initial matching results from the National Bone Marrow Registry (the “” many of you have registered with), however, this is really just the first step.  Once possible matches have been identified, the donors must be contacted and have a number of additional tests conducted.  In Allistaire’s case there were around 25 possible matches which would be narrowed down to the best 4 or 5.  Only the actual chosen donor qualifies as the, “identified donor,” so all of the testing of these best 4 or 5 is not covered by insurance.  My mind was racing and I just really couldn’t believe the stupidity of the situation and anger swelled in me as I realized that Allistaire might not have the best of what she needs because of money.  How utterly foolish of the insurance company – the best match gives Allistaire the best chance of surviving with the fewest complications.  Maybe that’s not all that important to Blue Cross Blue Shield of Montana but it IS TO ME!  Pay the money up front and pay less down the road – is that not obvious?!  Despite being a person who really struggles with anger, I can honestly say that I have not experienced a lot of anger in this situation with Allistaire’s cancer until now.  “So what are we going to do?”  Apparently the National Bone Marrow Registry also has a foundation which, if you are approved, can pay 1/3 to 1/2 of the testing costs.  Laurie also said that she could be very strategic in what testing to request so as to minimize cost and maximize the info it would give us about the markers that need to match.  All I could really think about were Dr. Pollard’s words that we needed to find a donor as fast as possible so that Allistaire would not have to have more rounds of chemo simply due to timing with a donor.  So, the search had not really even begun and here we were over a week and a half into this thing.  With heavy heart I greeted Allistaire that morning of her birthday.

Later that day as Allistaire was getting her expanded cord blood cells, Ann Dahlberg, one of the bone marrow doctors conducting the clinical study Allistaire is participating in, was talking with Dr. Julie Park, one of the attending doctors.  They asked how I was doing and I said that perhaps they could give me their opinion.  I relayed the situation about our insurance not covering the bone marrow donor search.  I had asked for a meeting with Dr. Chow for that afternoon, since our Dr. Pollard was on vacation.  The next moment makes me smile.  Dr. Park, in her sassy tiny way, basically said, that No, this was not going to be an issue, this would not prevent anything that Allistaire needed, that she thought the hospital would cover that cost, and that she was on it.  No need to keep the meeting with Dr. Chow later that afternoon, she would get this thing figured out.  Though Dr. Park is the neuroblastoma guru doctor and not our own, she has been our attending doctor on service enough for me to know this lady means business and is fully competent.  She’s sort of a super skinny fire ball.  Yes, I had prayed to God – handing this scary situation over to Him earlier in the morning and I was delighted to see it carried off down the hall, out of my hands.

The next morning another phone call brought unexpected, heavy news.  After the conversation with Laurie the day before, I was feeling frustrated and unclear on who was really in charge of making these decisions about transplant on Allistaire’s behalf.  On one hand is Dr. Pollard who is the queen of AML and has known Allistaire for 16 months and who told Sten and I that our first desire was a Unrelated Matched Donor (because neither Sten, I nor Solveig were matches) and the next best would be matched cord blood.  On the other hand are the folks at SCCA who actually conduct the transplant process.  My perception that the donor search was delayed and that there was an over exuberance about cord blood was unsettling me.  As I sat in Starbucks eating my breakfast, I received a call from Dr. Ann Woolfrey who is the physician who reviews each patients case as decisions are made for the best suitable “blood product,” for transplant.  Essentially Dr. Woolfrey told me that there would be no donor search due to the extremely high-risk status of Allistaire.  Two things I did not like – no donor search and very high-risk.  What it comes down to is that we need to move as quickly as possible to get Allistaire to transplant.  She said that the 5-year survival statistics for someone in Allistaire’s high-risk situation are equivalent for both those who receive donor marrow for their transplant as for those that receive cord blood.  As I mentioned before, I asked about GVHD as an added danger with cord blood and she said that I could pick my poison – relapse or GVHD.  Wow.  Not good options.  Either we go through all this and ravage Allistaire’s body all to have the cancer to come back again or we can go through all of this and ravage her body more potentially and have a better shot at the cancer not coming back.  The theory with Graft Versus Host Disease is that it also has a GVL or Graft Versus Leukemia effect which is the idea that the new immune system can better identify and destroy any remaining cancer/Leukemia cells.  My understanding is that cord blood is not matched with as many markers as donor marrow.  Cord blood is only matched with up to 6 matches where as donor marrow can go up to 10 matches.  I believe that this is because cord blood contains more elementary or foundational/less differentiated cells than does donor marrow.  As a result of the reduced specificity of the match with cord blood, there is the perception that there may be more complications with GVHD but the potential benefit of greater GVL effect.  The reasoning for viewing Allistaire as very high-risk is because she has relapsed AML which is an aggressive form of cancer and because of the fact that it came back in her skin.  My heart was so heavy and I just really wanted to talk to Dr. Pollard, this kind face that knows us, has hoped with us and cried with us.  I wanted to talk with someone who knew my child and not just the statistics about my child.

This Tuesday afternoon I was able to sit down with Dr. Pollard and get more clarification.  She is in agreement with Dr. Woolfrey that we should move forward with the cord blood units for the following three reasons:  they are available now and we do not want to delay transplant or expose Allistaire to more toxins in the form of another round of chemo, they are excellent cord blood units for Allistaire and there is apparently actually some data to suggest that relapse AML patients may have a greater success with cord blood transplants.  The cord blood units are 5 out of 6 matches which statistically bears out that they are equally as good as 6 out of 6 matches.  Additionally, they have a very large cell count – nearly 10 times what Allistaire would actually need.  They base the cell dose on the body size of the patient and for reasons unclear to the researchers, transplants with high cell doses seem to move along a bit more quickly which in turn reduces the time frame in which the patient has no functional immune system and they are vulnerable to infection.  In larger patients, two cord blood units are often used.  The expanded cord blood that Allistaire received last week for the clinical study comes from cord blood units that are too small in cell dose to be used in transplant.  Dr. Pollard suggested I may enjoy talking with Dr. Colleen Delaney who heads up the cord blood transplants.  During the transplant process Allistaire will not have one assigned doctor because her care will no longer be disease-specific, but process-specific.  However, Dr. Pollard thought Dr. Delaney might “hover” a bit over Allistaire if I were to talk with her personally.  If you check out Dr. Delaney on the SCCA website, you’ll see she appears to be quite a smarty pants and probably a pretty great person to have “hovering,” over your child.

Allistaire being very high-risk is primarily due to the fact that her AML came back in her skin.  She would be high-risk simply because she has relapsed AML.  However, AML in the skin is associated with extremely poor prognosis.  Man do I hate these euphemisms – “poor prognosis.”  It’s like no one can bear to say she doesn’t have much of a shot at living.  I suppose it’s hard for me too.  I tend to say, “she may not make it.”  It’s way harder to say that most people in her situation die and there is only a slim shot at her living.  Apparently though it is not completely clear what Allistaire’s situation really is.  According to the pathology report of her biopsy, the cancer cells were in her dermis and the sub-cutaneous layers, not the epidermis which is your skin.  The data on AML in the skin is very limited because it is very rare and as such the numbers of consideration are small and cover a span of time.  All of this to say that a clear prognosis for a patient with AML in the skin is limited by the fact that we are working with small numbers and even smaller numbers when you consider only those patients being treated with the current conventional therapies.  On top of it, because Allistiare’s cancer cells are not technically in the epidermis, but in the layers beneath, it is unknown if the cancer cells in that location will respond to chemo and radiation more like cancer cells in the skin or like chloromas which are defined as solid collections of leukemic cells occurring outside of the bone marrow.  The cancer cells in Allistaire’s lymph nodes are considered chloromas.  I am told that chloromas typically respond well to chemotherapy.

Dr. Pollard also gave me some more specifics about the timing of the coming days and weeks.  Transplant is dependent on Allistaire being in remission.  Remission for Allistaire is determined by her bone marrow and the AML masses seen on her CT scan which includes the area on her back.  Allistaire’s bone marrow started with 1.1% leukemic blasts and must be below .1% and ideally 0% to be considered in remission.  Another CT scan will look to see if the masses are gone.  If anything still shows up on the scan, biopsies of these areas will need to conducted in order to determine if the remaining cancer cells are dead or alive.  As I mentioned, while Allistaire’s lymph node in her arm pit and the area on her back are tremendously reduced in size, you can still feel a little remaining.  All of this testing will be done once Allistaire’s ANC has risen to 500.  Basically you must wait long enough for the marrow to recover and presumably the cancer cells to recover from the chemo to see what amount of cancer remains.  The other component dictating the timing of Allistaire’s transplant is the radiation schedule.  Allistaire will receive TBI – Total Body Irradiation.  She may also require more radiation to specific areas on her body like her lymph nodes and/or back.  At this point, the radiation schedule allows Allistaire to start radiation on either April 4th or April 11th.  She will be transported by ambulance to and from the University of Washington for her radiation.  At this point I don’t have any details at all about her radiation.  Dr. Ralph Ermoian, the radiation oncologist at the University of Washington, is planning on coming by tomorrow or sometime over the weekend to start the radiation discussion.  I also don’t have any details about the chemotherapy Allistaire will receive as part of the “conditioning,” component of transplant.  Doesn’t “conditioning,” sound so innocent, even nice?  Myeloablation is the goal of all this conditioning, meaning the complete destruction of Allistaire’s own bone marrow. The SCCA docs decide what type of chemo regimen they will recommend.  Sounds like I may hear about this relatively soon.  So, it is possible that Allistaire could go almost directly from this round in the hospital into transplant.

From the point in time in which I began writing this post this morning, to now at past 11pm, we’ve had a new and serious development.  Allistaire coughed.  She coughed a few times and a tiny bit of clear liquid was seen running from her nose a few times.  We almost immediately put into isolation which means Allistaire cannot leave her room.  I can only leave her room to go in and out of the Unit.  I am not allowed to use any common area or even access my food in the refrigerator.  I have to ask the nurses or CNAs to bring me food and heat it up if necessary.  That means no more riding bikes for Allistaire until she is symptom free.  A nasal swab was ordered and it came back positive for RSV (Respiratory syncytial virus).  For most of us this would not be something that would have much of an effect on us.  For Allistaire it could lead to pneumonia and would absolutely delay her transplant until it is gone.  I remember asking a nurse earlier in this whole cancer journey, “how do people actually die of cancer?”  I just couldn’t quite understand what was the specific cause of death.  Sometime it isn’t the cancer itself, but the utterly vulnerable place the “treatment,” puts the patient in.  Pneumonia could be the death of Allistaire.  So, here’s what I praise God for: that the staff here are totally a tune to the slightest symptoms to catch things early, there are procedures in place to help prevent the spread of sickness in the first place, they have super cool tests that can tell you exactly what sort of sickness is present and in this case, there is something they can try to rid Allistaire of the virus.  Allistaire will be given Ribavirin, an anti-viral drug that kills the virus by interfering in “RNA metabolism required for viral replication.” She will be given 3 2-hour doses a day for five days.  What this means is that she will sit under a tent-like set up on her bed for 2 hours while a nebulizer blows in the Ribavirin which she will in turn breath in.  Though there is a tent, the Ribavirin will remain suspended in the air in the room for up to one our after each 2-hour dose.  During this time I must wear a mask, am recommended not to wear my contacts, cannot be pregnant or trying to get pregnant.

So here we are.  Ironically I gave this post the title, “Vulnerable,” this morning before I had any clue Allistaire was sick.  It feels like Allistaire’s life is a bit more precarious than it was before.  Will she be in remission?  What in the world will this horrible chemo and radiation due to her body?  Will GVHD take her down?  Will RSV prevent her from ever getting to transplant?

Allistaire was discharged from the hospital on May 2, 2012 at the end of her treatment for Acute Myeloid Leukemia.  She was doing great but we had to wait a few weeks before she could have the little, “line pull,” surgery in which her first Hickman catheter was removed.  In those two weeks we had a bit of fun including a bike ride along Alki beach in West Seattle.  When we were all done I had Allistaire sit in the grass next to the car while I attempted to get her tricycle in the trunk.  It fits, but only one way and I can never seem to remember which way.  I had been turning it this way and that for a few minutes when I looked over and did not see Allistaire.  I frantically looked all around and was horrified to see her standing in the middle of the road – a relatively busy road.  I was shaking as I buckled her into her car seat.  A few months later she was eating lunch and nearly choked to death on a slice of strawberry.  Both times, I could not believe that my child may have survived cancer only to nearly die from some little thing or stupid mistake on my part.  Both times God reminded me that He always holds Allistaire’s life.  On one hand she is always vulnerable, far more vulnerable than I realize and on the other hand, God is always holding her.  Allistaire belongs to the Lord.  The Lord God is the giver of life and only He can righteously decide when our lives will end.  Our lives will end and it is His prerogative to determine when that will be.  No matter what assails my little beloved, she is secure in the Lord’s hands and He will keep her here with us until He sees fit to bring her home to Him.  It is easy for me to have downcast eyes that sees life only from the vantage point of this temporal plane.  But ever He exhorts me, “lift your eyes.”