My friend and fellow cancer kicking mom, Pam, told me yesterday about a family who were told their five-year old daughter, Madeline, had an untreatable brain tumor.  As they left the hospital with nothing but an unknown amount of time left, the doctor told them to remember that they had forever to mourn, but a limited time to fully enjoy their daughter.  She died five days later.  Everyone’s journey is and will be different, but something about this story pushed me just enough to the side of the rut of sorrow from the past few days that I was able to grasp onto some tangible goal to set my mind to.  I still didn’t have any clue if or how I could spend, “quality time,” with us as a family knowing what’s before us.  But today Sten and Solveig arrived.  At first Allistaire was quite grumpy and still in a fair amount of pain from her bone marrow biopsy which has required a fair number of doses of pain meds.  But it wasn’t so long before the two girlies were enjoying one another.  As I stood back and watched them interact, I delighted to see a form of medicine not available anywhere in this hospital.  I watched glee on Allistaire’s face as she and Solveig were just utterly silly together, silly in a way I have no capacity.  I guess it takes a 3-year-old mind to think what the 6-year-old is doing is hilarious.  We actually had a fairly lovely morning together and I didn’t think non-stop about cancer or fixate on these perhaps being the last times together laughing.  I was somehow able to simply enjoy.  I really hadn’t thought this was possible, but this morning gave me a glimpse that it is indeed possible.

When I awoke this morning I did not feel as deeply wounded by my swamping sadness.  I have always known to put my mind and efforts toward something in hopes of producing something worthwhile.  It came to my mind that this is what I have before me.  Me, the task oriented person, was blessed this morning to realize that this is a work before me.  No, I can do very little to impact whatever the outcome will be, but I do very much have choice and ability to impact what these days look like, no matter how short or long.  I have forever to grieve if it comes to that.  What I do have is right now.  I have the opportunity to help my daughter fight this fight and win and to fight this fight to possibly die with as much beauty and dignity and joy and peace as possible.  When I saw Solveig’s beautiful, cheery little face this morning, her eyes bright and hair swinging, I was reminded, this child is alive, this child needs me.  I do not disregard the possibilities.  For my sake, for Allistaire’s sake, for Solveig’s sake, I must face them.  But, I cannot turn so far inward into my grief that I miss the very present lives right in front of me.  Okay.  Game on.  Let’s do this.  This is what is before us.  I don’t know how to do this.  I have no clue. And no, I am not strong.  I am not wise.  I am broken and weary and frail but that is not all that I am and there are lives – not only one life, but lives worth fighting for.  I am their mom and I ask my Father in heaven to guide me to care for them through all the hours and days of this.

So here’s the plan. First we gather all the data to know exactly what state Allistaire’s body is in. Overall she is in good condition – her kidneys are working great, her liver is fine and exactly what they would expect.  Her RSV is virtually non-existent and her rhino virus continues to go down.  She has no symptoms.  She had an EKG and echocardiogram today that in a quick pass looked alright despite some diminished function, but we will be getting a cardiology consult to see if there is anything we can do that can give her heart added protection for what is to come.  A blood draw tomorrow will help take a look at her pancreatic function and a CT scan will look for fungus in the lungs, respiratory infection and the status of the two spots of bulk disease – her lymph node and back.  There is no indication that there is an issue with any of these but we need to check to see where things stand.

The goal is to give Allistaire a round of chemo with no expectation that she will be in remission so that she can participate in a clinical study which is specifically for kids who are not in remission.  If the chemo were to miraculously put her into remission, we could move forward with the original transplant plan which used cord blood.  But because remission seems highly unlikely, we are setting our eyes on this clinical study which uses an old, old chemo in place of total body irradiation and a chemo that has been used a fair amount but not in kids who are not in remission.  It has been used with some promising success in adults not in remission but I believe Allistaire will likely be the very first child.  The clinical study requires there to be no active infections (just like the last one so we need to keep that RSV at bay), clean spinal fluid, over 5% blasts in the marrow and no more than 10,000 blasts in the peripheral blood.  The first part of the spinal fluid test have come back clean and they are not anticipating the final portion of the test to show anything different.  Today’s blasts amounted to 3,000 and most frighteningly, the flow cytometry test actually showed 80% blasts in her marrow.  Now there really are very few cells in her marrow, but of those present, 80% are leukemic.  Even though this does not effect her eligibility or presumably her prognosis in transplant, it is still a startling number.  Ultimately the idea is that Allistaire’s leukemia will never be cured by chemo but we rely on the hope that GVL – Graft Versus Leukemia, where a new immune system will actually identify and destroy the cancer, will be her cure.  Dr. Pollard noted that she believes immunology is what will eventually be the crack into curing cancer.  So beautiful huh?  An immune system, so beautifully designed to protect, will be able to be used to kill cancer!  May it be!

So the really big change in the road ahead is that the transplant clinical study requires a 10 out of 10 matched bone marrow donor.  Yep, here we are again, two months later.  This is what we need – a perfectly matched donor.  The chemo is really only taking place to give us enough time to identify potential donors, complete testing to identify the one best donor and make arrangements for the actual “procurement,” of the cells.  The bone marrow search folks are not allowed to communicate the urgency to the possible donor because it could be viewed as coercion but we will really, really need this to happen fast and in the right time.  We need good healthy marrow – which by the way comes from young adult males – so listen up boys – it’s too late for you to help Allistaire specifically, because the search has already begun, but there is someone else whose life depends on your sacrifice!  So go to Be The Match.org and register today!  And I don’t want to hear any of this nonsense of not liking needles.  Get over it.  Wouldn’t you want someone else to do the same for you, or for your sister?

Yes, we briefly talked about what it would look like if we did need to take Allistaire home and what our options would be.  We skimmed this because we are not on that path at this point.  It is still hard to imagine how death actually comes, but I am choosing to direct my eyes to the lives in front of me.  If and when we get closer to that, we will have a lot more to discuss.  For now we will continue all the ways that Allistaire’s life needs to be supported and protected to give her the best shot at what the steps before us.

Lastly, we are choosing to wait several days to begin chemo in order to prioritize time with our immediate family of four, Sten’s family who is all coming out from Bozeman this weekend, and hopefully my family as well, in the coming week.  We are looking forward to making the most of the great weather that will enable us be outside and have fun without being around a lot of people.  We are thinking about starting chemo Sunday evening.

I don’t think I’ve actually cried today which is truly remarkable now that I think about it.  No parent wants to help their child die well.  To even say such a thing seems like a mystery.  As parents, Sten and I are entrusted with helping our children through whatever stage they must pass through.  I hope of course that this is simply a very dark valley that we will look back on, thankful for how it has formed us, but with all four of us together.  I don’t know what the future holds.  You can say those simple words but then they come into clearer and clearer focus.  You live the reality of insecurity, lack of control, finiteness, the illusions fade or are stripped away.  But I suppose that is part of the good that is a by-product of all this, at last what is true is more defined and visible.  Tonight I go to bed still very fatigued but a bit more light-hearted.

Thank you Father in heaven for hearing the overwhelming number of heart-felt prayers on our behalf!  And thank you Ginni for the gorgeous bracelets/cuffs you made for Allistaire and I – I love them!  You are too sweet!  And a special thanks and joy for all the amazing women folk who have rallied around me and our family, near and far, you are a force to be reckoned with and it really does make me giddy when I think of the beauty of the body of Christ!

I don’t know how to write this post.

I am exhausted.

“You can choose to be done with chemo…you can choose to take her home…quality of life…hospice in Montana.”

These are bits of what words I had to try to soak in this morning.  Sunday Allistaire’s blasts were 5-6% and could be potentially explained by a recovering marrow.  Monday they were 16% and it was obvious she was not in remission.  I felt overwhelmed at the idea of another round of chemo before transplant and the fear of it not working either.  This morning her blasts in her blood were 24%.  I suddenly thought maybe we needed to bring Solveig out here to Seattle to see Allistaire because it has already been a month and a half since they’ve been together and if all went ideally from this point forward, it would be at least 2 more months.  I thought Solveig should come right away before we started more chemo.  I wanted to ask Dr. Pollard.

Dr. Pollard called and agreed it would be good to bring Solveig out, “unless [we] didn’t want to do any more chemo.”  It was at this point the conversation turned to a place I had not expected.  I will write more later but basically, the next step is the last option and the truth is – it’s a clinical study, it’s a long shot.  We have no way to know if it will work.  Each time you go through chemo and it doesn’t work, it lessens the likelihood that the next step will work.  Eventually, you come to the end.

Sten and I decided that he and Solveig would fly to Seattle tomorrow morning so we can spend some, “quality time,” as a family together.  It may be the last time we spend together doing some fairly normal things.  We don’t know what’s ahead for Allistaire.  I want to throw up.  I wail silent, dry heaving wails.  My face hurts and my brain can’t stop thinking of how I don’t know how to live without her.  i don’t know how to do this.  How do I spend, “quality time,” without sorrow that strangles my breath?  Sten asked Solveig if she knew why they were flying to Seattle and she responded, “yes, to see Mommy and Sissy.”  Then Sten told her that this was true and they were going now because “Sissy’s medicine isn’t working and we don’t know how long we will have with her.”  How can I tell you what it feels like to have your 6-year-old crying and telling you on the phone that she, “hopes Sissy doesn’t die,”?

I am one of “those people.”  The people “out there,” that this happens to.  Bewildered.  You look around you and you realize, no, this is real and it is your life and your child and you simply cannot fathom it.  I lay with Allistaire at the beginning of her nap and rub her back and I absolutely can not imagine her flesh cold and dead.  I can not imagine looking out my kitchen window and seeing only one little girl playing, alone.  I fear I do not know how to be the mom Solveig will so desperately need me to be.  I don’t know how to go out into the world and live with part of my core amputated.

Sten and I do not feel done.  I look at Allistaire and I think, she is too alive, we cannot yet be done. Her preliminary bone marrow test results today showed 50% blasts in her marrow.  We started with 1.1% and went up to 25 and here we are at 50%.  Tomorrow she will likely get and EKG and an Echocardiogram.  Results from her spinal fluid and the flow cytometry should be back.  We have a meeting at 3pm tomorrow with Dr. Pollard and Michelle, from the Pediatric Advanced Care Team to discuss our plan.  We hope to have several days of taking passes out of the hospital and enjoying one another before we start this next round of chemo.  This last round of chemo.  Allistaire’ s ANC was actually zero today so we still have to be very, very careful.  As Sten noted, we have worked so hard to keep her safe, we cannot abandon those efforts now, despite being given the option to leave the hospital all together.

I call out to the Lord over and over, but ultimately He has not promised me her life here, nor has He promised to take away the pain of her loss, though these are the things I ask for.  This is not an “either/or” situation.  This is an “and” situation.  I know pain and I know comfort.  The comfort has not taken away the pain but it surrounds and holds the pain.  The pain is acute and slicing and ripping and stinging and the comfort does not come at the same pace because at its very nature it is eternal, it is beyond this time and the finiteness of this reality.  But I look with hope for comfort whose dimensions far surpass this thing that threatens to suffocate the life out of me.  I hold to the comfort that Allistaire will not be an angel, but a child of God fully dwelling in His presence with fullness of joy and life.  I hold to the comfort that I will see my beloved again and that this is not truly the end.  I hold to the comfort that God will redeem this and the beauty will one day outweigh the dark agony.  I hold to the comfort that though I cannot see how, God will carry me, day by day, by day.  I hold to the comfort that He stands with me now.  He stands in the circle of doctors doing rounds.  He has not forsaken me.  I pray that this ragged, gaping hole in my heart and gut will be filled with His grace and that somehow, in the very midst of what feels like my own death, God would overflow and streams of living water would meet the mouths of the parched.  That out of this death, in it’s myriad of forms, life, life abundant would take root.  Lord hear my prayer.

With each step I move toward the west.  The snow has gathered in the great cracks of the runway and airy snow swirls and races, skimming the surface like little spirits trying to keep up.  My eyes take in the Bridgers as we make our way slowly forward.  Their foothills stepping out of the clouds, reaching their blues and whites out into the valley.  The plane halts to warm the engines and quakes as the might is restrained; it shudders trying to contain the power and I attempt to keep from blinking, soaking in the contours of this face of the land I love so much.  Only the orange and red glow of runway lights to break up the blues and whites and soft brown.  I feel conflicted, not knowing if I should turn away or continue my gaze.  Then we are moving again and I see the far southern slope and know my home lies just beyond it.  There my child sleeps and my husband has returned.  The plane turns and it slips from view.  Then the hurtling forward that would be sheer insanity if it didn’t end in flight.  We are aloft and there the twists and turns of countless creeks and rivers, black against the white fields, their erratic path undeterred by the geometry of man’s life.

Twenty-four thousand feet above the land, the perfect blue of sky and morning sun at my shoulder, toward the west, toward Allistaire, toward a fight for her life that is relentless.  While I was in Bozeman, these past four and half days, her ANC has begun to barely rise.  Its highest point had been 24 and was unknown yesterday because there were blasts in her blood.  Blasts.  I could not believe it and my heart sank and stayed there weighty and slow.  I wanted to return home full of joy from my visit with Solveig.  Full of hope for the days ahead and hope for an open door to transplant.  There are only a few, 5-6%, which equates to only 10-15 cells, but they are there and their true nature is unknown.  It is normal to have 1-2% blasts as we all have some immature cells at any one time, but this is a bit beyond that.  This is nothing compared to the blasts of nearly a month ago that consumed nearly 90% of her blood cells present and was up to almost 9,000 cells at one point, but there they sit.  It could be that as her marrow is, “waking up,” as they say, it is sputtering along and pushing out a bunch of immature cells that are not leukemic.  That is what we so hope for.  Tomorrow at 10am she is scheduled for her bone marrow test, the 30^th day of this round of chemo.  Dr. Leary, the current attending doctor, believes she will be ready despite such a low ANC.  I had been told we needed an ANC of 500, but as often seems the case, there is a bit of inconsistency and I am told there is no, “magic number.”  Her white blood cell count rose from 600 on Saturday to 1,600, so Dr. Leary is hopeful she’ll be ready.  She expects we should have preliminary results by the end of the day on Tuesday.  Preliminary results would give us the morphological count of her blasts.  This is the count done under the microscope and must be 5% or less to allow her to move forward to transplant.  Results from the Flow Cytometry test would not likely be back to late the next day, and while they hope for the lowest numbers possible, we will know from the morphology whether or not transplant is the next step.

“She looks really great,” said Dr. Leary on the phone.  “She always looks great, but still has cancer, “ I respond with a bit of cynicism in my voice.  I want to take how she looks on the outside as some sort of comfort and encouragement that this indicates what’s going on in the inside, but I know that I cannot.  On the other hand, I know from the stories of others, that I should and need to take great joy for how well she is doing because it could be ever so much worse.  It is a true gift that our main fight is again the cancer itself and not all of the complications with other organs and systems that could also be present.  I praise God for all of His protection of her sweet little body.  While she continues to have the rhino virus, she has no concerning symptoms from it and the virus levels of the RSV continue to drop.  The nasal wash test from last Thursday night was a cycle time of 35, being 32 previously.  So, she continues to head in the right direction as her lymphocytes increase.

I awoke at 3:45 this morning and as I shut the door to the house, in the dark, I wondered again when I would enter my home.  The past four days have been wonderful.  When my dad told me on Sunday afternoon that he was able to take time off for me to go home to see Solveig, my gut response is that I didn’t want to.  Oh, I so wanted to see Solveig, but I didn’t want to go home.  It felt too taunting, too painful to be so reminded of that world, that life that is so utterly unavailable to me.  These days have been both joy upon joy and squeezing pain.  The look of surprise on Solveig’s face when she turned and saw me standing there in the airport, well, I could not have asked for a greater gift.  She ran and jumped up into my arms and stayed there far longer than I would have guessed.  We sat on the couch and she read me Beatrix Potter’s, “Tom Kitten.”  I delighted to see how much she has progressed with her reading and took in the beauty of her eyes and round cheeks as she turned each page and examined the next picture.  We held hands and had fun, moving from one activity to the next as ideas came to her mind.  Saturday was an especially nice day for the all three of us together.  It began with time at the Cancer Support Community where Solveig is participating in an eight-week kids program and includes a time for parents and caregivers every other week.  Solveig seems to be really enjoying it and has a special affinity for a boy almost her own age whose older sister has been battling a brain tumor for years.  They have lots of fun and discuss things like whether or not you can catch cancer from someone else like you can a cold.  They made clay models of what they think cancer looks like.  It is also an intense and wonderful time for the parents.  It is a strangely lovely experience being in a room with other parents whose lives have been forever gouged by cancer.  I am so thankful Sten has such a place of unique support even as he is away from the hospital most of the time.  We went to lunch at La Tinga, our favorite taco place, then off to the Dinosaur Park for some silly fun in the whipping, wild wind.  We bought some soccer shoes for Solveig who begins her short Bozeman Blitz soccer season with practice today.  We enjoyed some frozen yogurt and a walk along Peet’s Hill that gives a great view of the valley on all sides.  It was just a perfect day with the exception that our beloved Allistaire was missing.

I walked into the still room and turned on the lamp.  I looked long at her big girl bed that she only slept in for a week before we left.  I intended to gather her remaining 3T clothes and to put away all the now too small 2T clothing.  I pulled the chain to the light in her closet and there it sat.  The Trader Joes bag full of snow clothes sat in the same spot that it always did, right where we left it.  I pulled each item out slowly, the snow pants to be put away in the bin and the little lavender mittens.  Her Patagonia capilenes that match Solveig’s are put in the bottom drawer.  I throw away the size 4 diapers that no longer fit.  Earlier in the day I noted that the stack of books, the glass vase and the ceramic planter shaped like a nautilus shell were out-of-place on the top of the piano – evidence of someone’s kindness to come to my house and dust.  The grouping of blue glass on the top of the toilet told the same story.  Someone has been here, doing tasks that are mine to do, but they are not me.  While I am so thankful for the kind help, it is also peculiarly painful to see someone else living out your life that you are cut off from.  The bag sits in the same place.  I think of the tsunami in Japan and feel that Allistaire and I have simply been swept away.  We are gone but our life here remains, or at least the evidence of it.  I think of my ancient art history class and Pompeii, where some disaster struck with such sudden force that everything stood still in time, just the life of the inhabitants sucked away.  These four days have been wonderful and they are intertwined with sharp and dull pain and sorrow heavy.

As Sten and I held hands driving down Frontage Road, driving to the inevitable point where he would turn and go, I wondered when I would return.  I wondered when I would sit in my own car again and drive roads of my homeland.  I wondered what will life be when that day comes again, what will be Allistaire’s reality.  My life feels balanced on a narrow ledge, ever swaying with the winds of blood test after blood test.  I want to feel stability under my feet and I have contemplated how to remove that which causes me to feel ever precarious.  I must subtract how Allistaire is doing if I am to not feel ever buffeted, but to remove Allistaire feels like being asked to remove a vital organ and live.  I don’t know how to do it and I don’t want to.  I know that I am rooted in Christ and so ultimately my foundation is sure, but oh how the wind blows relentlessly, I am being bowed under its force.  I will be forever marked by this journey.

Below me lie thousands upon thousands of snowy peaks, only their upper edges lit up white by the rising sun and I am reminded.  I am reminded of another flight I took as a teenager to go see my grandmother in Georgia.  On that day the plane took off from Seattle in thick clouds.  I mourned the lack of view, having hoped to see the splendor of the Cascades.  But then there it was, the vast perfect blue of the clear sky and snowy monoliths rising up above the clouds.  It was the first time I remember being so struck by the significance of perspective, of vantage point.  Truth and reality are not only that which we can see, which we can perceive with our senses.  There are also truths and realities, just as mighty and vast, and resplendent that we cannot see, blocked from our view by time or space, by dimension.  It is easy; it is natural to look with my eyes and to take in only this view.  But I purpose to lift my eyes, to take in the view with my spirit, with the eyes of my heart and to see the reality of these days all wrapped up and contained in a greater, vaster expanse of truth, of realness.  The clouds settle thick in the low valleys, blocking the sun that stretches out across the land.  As the plane descends, I head back into this valley we are forced to walk.  But I will my eyes up.  Every day and every hour I ask you Father God, Master of Heaven and Earth, you Ancient of Days, give me eyes to see You!  Lift up my eyes!  “Why so downcast oh my soul?  Put your hope in God!”

Another day begins with no ANC, in fact, like many days, it simply states: No Data.  I sure am looking forward to the morning that begins with an ANC!  It has been 36 days at zero and I’m ready to get this show on the road!  Of course, another day with no blasts is pretty glorious!  But what we need is her marrow to be producing healthy cells and no leukemia cells.

This morning is the first morning in a long time that I awoke at my regular 6 am for shower, breakfast, and time to do things like this – write a post to keep everyone up to date.  Yesterday afternoon after Allistaire’s Ribavirin, she thankfully slept for a bit and I had a chance to sit out on the patio of the hospital soak in some early evening sun.  Then, I had a delightful phone call from one of the infectious disease doctors who told me that they had Allistaire’s RSV PCR (quantitative test) back and that while she still has RSV, it is in such low levels that they are going to give her a break from Ribavirin.  So no Ribavirin for at least a few days!  Sweet!  Thursday night they will do another nasal swab with the potential to resume Ribavirin starting Friday night – but who minds a few days off at least?  And maybe by then Allistaire will be getting some of her own blood cells zooming around that can fight this virus on its own.  The level of RSV right now is a cycle time of 32 which means that it takes 32 minutes for the virus to grow to a certain determined amount.  At the Bone Marrow Transplant Consult the doctor said that in order to go forward with transplant, they would not allow a cycle time of less than 20 but would greatly prefer a cycle time of 30 or greater.  So we are at this point even beyond, in a positive way, the range that they ideally want for Allistaire.  Or course, zero RSV would be the most optimal and we are still working toward that.  Her level of rhino virus is down a little but is still there.  This will just take time and fortunately is not something that will stand in the way of transplant.

It was quite a joy last night to not have to have the time pressure or irritation of Ribavirin.  Allistaire and I stayed up and I began doing a bit of packing to get her room ready for the big move.  On this Sunday, 4/21, in 5 days, the whole Cancer Care unit moves into the new building.  Everyone is pretty excited!  No one will have to share rooms anymore!  Everyone will have their own shower, a gigantic window, a couch that pulls out into a bed, a curtain that separates the caregiver area from the patient area, a refrigerator, sweet cabinets that allow staff to place things in your room from the outside hallway and you to retrieve them from inside your room and some sort of amazing air flow system that allows doctors and nurses to stand on one side of a line in the flooring and the patient on the other side without having to gown up if the patient is in isolation.  I’m sure there are a lot of amazing equipment and features that staff know all about that will elude me.  If you’re interested in checking out a few more details, here is a link to the hospital’s website:  Building Hope

Allistaire so very much enjoyed having Sten and Grandma JoMarie with us last week!  It was a great time for Allistaire to spend special time with Grandma and time just with her daddy.  And for me, it was quite enjoyable to have a break from the hospital and Ribavirin.  (By the way, did you notice in the picture of Allistaire with JoMarie – where do you think Allistaire got that cute nose and her chin?)

This morning I leave you at last, with a bit of video of the little lady herself.  I’ve had tremendous difficulty getting video added to the blog ever since they made some changes to WordPress.  So I’ve loaded the video up to YouTube so you can use the link to go check it out.  It’s a bit on the long side – 10 min, but hey, you’ve had nothing so far, so enjoy.  I just set my phone up on my leg and started recording so Allistaire had no idea which resulted in her just being her ordinary delightful silly self and I seriously cannot get enough of her!

Click here for the video of Cupcake Allistaire

You know those scenes in movies where some horrid murderer is straining as they press the pillow over the person’s face and all you can see are legs and torso tossing and arms flailing trying to fight back, trying to breathe – that absolute fight to live?  That’s what it’s like to put the mask on Allistaire’s face and keep it there.  Her cries are guttural and she tenses her body and flails her arms.  She writhes.  She is angry and terrified.  She is fighting to live but her fight may actually result in her death.  As I hold the mask down and oscillate from trying to be gentle and comforting to raging angry myself, I think of algebra.  I think about how if A = B and B = C, then A = C, except in this case it’s more like A = R.  If I cannot keep this mask on Allistaire, she will die of cancer.  Sounds extreme but if Allistaire does not get this Ribavirin and thus get rid of the RSV quickly, her transplant will be delayed and if it is delayed she would have to have more chemo which could destroy her organs or could not work and the cancer could grow.  If she does not have this transplant Allistaire will die.  A = R.  Extreme, I know.  So, as we both feel the sweat on our brow and our hearts beat fast and we tussle under this plastic tent, I am also keenly aware that Allistaire’s possible death wears her own face.  In these hours in the darkened room, with vents and hoses and tubes, Allistaire’s foe wears her own face.  What makes this all together worse is that as I try to fight off this illness that could be the death of my beloved, I look into her eyes and see her face.  It feels like I am fighting her, because I am even though I’m really fighting the foe that lurks inside, behind the face.  We lay opposing one another.  She behind the crinkly clear plastic, eyes black and wide in the dark and locked to mine, and on she screams as I lay outside the plastic, my arm inside firmly holding the mask in place.  It feels like I am in opposition with the one upon whose side I so solidly stand.  I want to be holding her close, pushing back the scary stuff instead of locked in this fight with her.

I thought yesterday morning from 6-8am was the worst two hours I had ever had with Allistaire, until 2-4pm yesterday.  I fought Allistaire for two solid hours, with out 20 seconds of relief, despite doubling the dose of Ativan to try to get her more sedated.  At the end of the two ours I fled the room, my face blotchy red and eyes puffed from hard crying.  My unbuckled sandles slapped the floors as I ran out of the Unit.  I went to the nearest bathroom and threw my shoes against the wall and clenched my fists and screamed a silent tantrum.

I wrote the above last Saturday.  It was an awful day and I haven’t had a chance to write since then.  Ribavirin is an absolute time sucker, consuming 9 hours of every day plus all the prep time and repeated conversations with Respiratory Therapists and their supervisors to get all the kinks worked out.  And it’s still going.  Today marks the 7th day of Ribavirin with a total of 72 hours so far.  But I am elated to report that the last several days of Ribavirin have been literally worlds different from a week ago.  On that horrid Saturday afternoon I did not know how I could possibly keep going.  I would do anything under the sun for Allistaire but that I did not know if I could really do.  There had to be a better way and clearly the doubled dose of Ativan did not work.  Turns out Allistaire had what the docs refer to as a “paradoxical,” reaction.  She reacted in the polar opposite way from how the drug should impact her.  So we decided on a different approach.  We dropped the Ativan altogether and upped the Benadryl to the maximum possible dose.  WOW – what a difference!  It worked!  She slept.  She didn’t fight.  She didn’t move all over the place and make the mask come off incessantly!  It felt like a miracle straight down into my lap from heaven.  So for those of you, of which I know there are so, so many, thanks for praying even when you had silence from my end!  These days I actually ask Allistaire to sit up in bed and help me fit the mask on her face so that it is comfy.  She  says, “okay mommy,” and up she sits.  I put the mask on her face and she adjusts it so it feels right and back she goes under the tent and curls up on her right side, often with doggie propped under her head as a pillow.  I still lay beside her for each two-hour dose but she actually adjusts the mask herself periodically as she sleeps to make sure it is on right.  At the most she cries a few minutes at the beginning of the dose because she doesn’t like the smell at first and sometimes toward the last 15 minutes or so she is weary of the strap around her head and the pressure on her nose.  What an utter relief!  Especially since the infectious disease doc says there may be more Ribavirin in her future.

It has been an exceptionally busy week.  On Monday, in addition to all the Ribavirin, we had four hours of red blood and 2 hours of platelets, ethanol locks, antibiotics, bath, etc.  The nurse and I actually drew a diagram of her two lines on the white board and plotted out a schedule to try to get everything in and out of Allistaire in the hours we had to work with.  All the necessary meds and activities of the day can really pile up and Allistaire is still not even a complex patient.  Our friend Abi who also has been fighting AML, had at one point after her transplant far more meds that had to go into her body than could be accomplished with 2 lines from her Hickman.  She actually had 8 additional pic lines and had so much hanging off of her body she couldn’t wear clothes.  We are nowhere near that but everything still requires a fair amount of planning and coordination between all of the folks that come together to provide Allistaire’s medical care.  I am often in awe of the number of people who work together to keep Allistaire’s precarious life going.  Here are the people I can think of off the top of my head who have direct impact:  Hem/Onc doctors which include an attending doc, a fellow, at least one resident, one or two pharmacists, the nutritionist, the current assigned nurse and sometimes a transition nurse.  Then we also work with quite a number of respiratory therapists, the infectious disease attending doc, the big-wig infectious disease doc Jan England, the ID resident and fellow, several different custodial folks who clean the room and empty the ridiculous amount of trash and laundry our life produces, Mohammed who cleans the hallway floors, Gina who takes lunch and dinner orders and all the folks who prepare and transport food, Ione who brings snacks each evening, loads of CNAs, nurse practitioners who do the procedures like bone marrow aspirates, transport nurses who take who take us from place to place in the hospital, child-life specialist Julie, Ashley the social worker, Michelle who provides me with support from the Palliative care team, pathologists and swarms of lab techs and pharmacists who actually put together all the meds and chemo and Ribavirin – and of course, behind it all, Dr. Jessica Pollard who is primarily responsible for the big view and coordinating options and steps forward.  Just a whole boat load of people!

Monday afternoon I received a call from the downtown SCCA (Seattle Cancer Care Alliance) to set up a time for out Bone Marrow consult.  JoMarie, Sten’s mom, was already planning on coming for the week and so we knew she could watch Allistaire and do the afternoon Ribavirin while I attended the meeting.  We decided that it would be best for Sten to be present for this meeting so he and his mom flew in early on Wednesday morning and Sten and I spent several hours at the SCCA.  It was a good meeting overall, but one that will require an entire separate post at some point.  Then Thursday morning in rounds, Dr. Fong, our attending doc, listened to Allistaire as he and about a million other people do every day, and heard “lots of cracks and wheezes.”  A stat x-ray of her chest was ordered and came back later in the day showing nothing of concern.  We are very, very thankful for that!  On Tuesday night a nasal swab test was conducted which came back late Wednesday night and was discussed Thursday in rounds.  The RSV test was “positive” but in such low quantities that it could not be measured and thus its reliability could not be counted upon – all that to mean, they consider it negative.  However, with the new sounds in her chest, we continue on Ribavirin while we await results from a second nasal swab test conducted last night and delivered to the lab this morning.  They are retesting RSV and for the rhino virus (common cold) which she also has, and for a number of other possible viruses.  The results could come back late today but more likely we will have them by rounds tomorrow morning. The ID doc did say that both RSV and the rhino virus could be the cause of what they are hearing but they want to consider the possibly of other, additional viruses.  One thing that we are very thankful about is that at this point, this bout of RSV should not delay Allistaire’s transplant further, assuming she were in remission.  The transplant team has identified the amount of RSV they would allow to proceed to transplant.  We have considered having regular and frequent nasal wash tests done with the real likelihood of more Ribavirin to keep her safe going into transplant.  Of course once she actually has her transplant, she will be even more vulnerable if you can imagine it.  Because she will be getting a cord blood transplant, this takes about 30 days for engraftment to occur.  Engraftment is when the donor cells have taken up residence in the marrow and have actually begun to produce blood cells and thus create in her a new immune system.  We have a very, very long road ahead of us and one that can literally change from day-to-day, sometimes from hour to hour.

In other news, Allistaire’s hair began to fall out a tiny bit last Saturday.  By Sunday it was falling out in huge chunks and everything was coated in her hair as though we were living with a long-haired cat.  Sunday night brought a really bad hair cut that sort of makes her like a concentration camp kid.  There is a wide bald strip down the top middle which looks pretty funny.  The best part is how excited Allistaire is about coloring on her head with markers once all of her hair has fallen out.  She keeps asking about it and I tell her we have to wait until it’s all fallen out.  She’s watched as we’ve drawn on Piper’s bald head a few times.  Also, just in general she is in much better spirits.  In retrospect, I believe the Ativan not only failed to sedate Allistaire, but had an overall effect of making her very angry and irritable.  Since she has been off of Ativan she has been sweet and cheerful and even helping the nurses with vitals – she rarely yells at them anymore!  She is pretty cute and just so much easier to deal with.  She continues to take her “by mouth” meds really well and has gained a bit more weight and is up to 16.5 kg.

Today marks the 19th day of this round of chemo, the 32nd day of a zero ANC, the 16th day of no blasts, the 47th inpatient day and most sadly, the 3rd day that Shannon and her family face life without their beloved little boy, Jaxon.  Jaxon, who also fought AML, passed away Tuesday morning.  We are blessed to have the opportunity to fight.  Jaxon was a little man who fought for life every single day of his young life, with his ever hopeful, determined mom, Shannon, constantly at his side.  The first time I met Shannon, Jaxon in her arms, she said that Jaxon was here to make a difference.  Jaxon had Down Syndrome and AML and number of other medical struggles, but he did indeed make a difference in the lives of many and to the advancement of science and pediatric cancer research as well.  We grieve with Shannon and her family but also rejoice in the fullness and beauty of Jaxon’s life.

So life really has been pretty great this week, sometimes tedious, but really so great.  Allistaire’s energy has continued to increase and she ‘s had lots of fun out riding bikes and running around.  She’s been doing an impressive job eating and has even gained some weight.  She started at 15.7 kg and was up to 16.3 on Thursday when she was weighed.  On top of it all there still have been no blasts showing up which is an immense relief.  We are still at an ANC (Absolute Neutrophil Count) of zero – in fact it has been 26 days at zero.  Quite a while to be completely without defense.

Hence this brings us to the sad news of the day.  At the exact moment that the door was open to the doctors for rounds this morning, Allistaire sneezed a huge inch sized snot bubble and Dr. Fong immediately turned the sign on the door to “Viral Precautions,” which means we’re back in isolation.  I have been asking a number of times in the last week about Allistaire’s occasional cough and intermittent runny nose.  I certainly don’t want to ask to be put in isolation but more than anything, I don’t want to waste time ignoring an infection of some kind that could be being treated and not delaying us further from transplant.  So here we are.  A nasal swab confirmed RSV this afternoon and of course we are back to having to do the much detested Ribavirin again.  I am heart-sick about it all, but it is what we have to do and at least this time I know what needs to happen.  Amazingly, I had the best nights of sleep I have had here yet, the past few nights.  I am thankful to be going into these next five days not overly tired.  We have 30 hours of Ribavirin ahead of us and days stuck in the room.

God sees fit to constantly remind me that it could be worse.  I was delayed going to switch my laundry this morning, by the oh so sad face of Shannon, mom of Jaxon.  We first met Jaxon, who is now a little over year and a half, about a year ago.  He has Down Syndrome and AML.  He has been fighting health struggles from the beginning of his wee life and today they are bringing him home with the very slim chance that he’ll make it but with the reality that they probably have days or at most weeks with him.  After crying in the bathroom for a bit this afternoon, I tried to compose myself and as I walked down the hall I passed a man I knew mostly by face.  I’ve seen him around quite frequently over the last year plus but just spoke with him for the first time last weekend.  His daughter was born in liver failure and had a liver transplant at one year, then got Acute Lymphoblastic Leukemia and then relapsed and had a bone marrow transplant last fall.  They are still here.  If I have to sit next to Allistaire in the dark for six hours each day for five days with a mask over her face, then I have it better than I could.

I’m in the middle of a book that has a lot to digest.  One of the main points is that we may not be able to change our circumstances, and thus in some ways are without choice or power, but the truth is we do have the choice to decide how we will respond to suffering.  Realistically this is quite minor, though it sits amidst larger, more significant pain and sorrow.  But regardless, I can mope around about this, and boy is it tempting because the truth is it just really sucks, but I’m asking God to help me face it with thanksgiving and confidence that He will get us through.

Today marks our 40th day in the hospital since we have returned with relapse.  Tomorrow will surpass the longest stretch we’ve ever had in here before.  There is no end in sight.  I meditate on this: The Lord is God.  The Lord is Good.

I awoke to sun coming in the window, despite closed blinds.  It’s Easter I thought flatly.  I wake up every morning alone where I’ve slept. This morning I barely allowed myself to glimpse in my mind what I used to wake up to seeing.  Light streaming through windows without coverings, the expanse of air up to the honey-colored wood-paneled ceiling.  Then I stop myself, no more.  Thinking of home makes it so much harder to continue the daily work here.  At home I am hungry as soon as I wake up but here at the Ronald McDonald house you can’t have food in your room.  This morning, I decide it’s early enough that if I go downstairs to the communal dining room there will be almost no one awake to see my bed head and non-brushed teeth, the mascara a bit smeared.  But as I enter the dining room I see Easter clothes and people talking gaily.  They seem normal.  They move normally and they almost seem like they’ve come from some other world where happy colors and patterns and flowing scarves are normal.  They chatter with one another on the bright Easter morning, evidently preparing a brunch I had not known was planned.  I did not remember seeing a flyer in the elevator telling of this event.  So I ask the woman prepping fruit at the counter near my mini-fridge assigned to me, “What group are you with?”  She seemed to hesitate and gave me the name of her family.  I felt like crying.  There is part of you that thinks it better to disregard such significant events as Easter when you are locked away in the hospital world reality.  Your life cannot possibly look like life should look, or at least as  it has most often looked like on such days.  It feels a bit tortuous to even try because it just brings images of other times so along side your present reality that the juxtaposition, so clearly seen, just makes the ache well up.  So today was just to be any other day with the exception of the little Easter egg hunt on the Unit for Allistaire.  So when I saw this family moving around the kitchen together, laughing, prepping all the tasty food and all for us, all for those of us who are stuck here, I felt like crying.

When I got in the elevator I wanted to see if the flyer had said something about the brunch.  There at the bottom, under March 31st and above the line about the Easter Egg hunt, was this: “10 am Easter Brunch with Johnson/Gregoire Family.”  I laughed right out loud.  That’s why the woman prepping the fruit had looked so familiar.  I had to go back and thank her.  I waited until she turned from talking and asked her what her name was, to which she replied, “Chris.”  I laughed again and told her I thought she had looked familiar.  So, this is how I met the Governor of Washington State for the last 8 years, standing in my pajamas with bed head and smeared mascara.  This time I did cry.  That some other family who could be spending their beautiful morning doing something entirely different, had a heart to serve us.  Wow.

Later I headed back to the hospital to enjoy the Easter egg hunt with Allistaire and Sten.  Allistaire absolutely loved walking around the Unit looking for eggs.  She was a bit dismayed to discover that there was no candy in the eggs, but this did not diminish her motivation in continuing the hunt.  She selected a little stuffed bunny for Solveig and a bottle of bubbles.  She did a great job eating lunch and then took a nap.  During nap time, Sten and I enjoyed a lovely picnic lunch at Magnuson Park just up the street.  It was an absolutely glorious day to be out in the sun and near the water.  As before, the Sunday evening blues set in as the time for Sten to leave once again, drew near.  It’ll probably be about 3 weeks until he comes out again.

As Easter Sunday winds down, I want to ask those of you in Bozeman to consider participating in a blood drive on Saturday, April 27th.  The blood drive is being done in honor of a fellow cancer-fighting little girl also from Bozeman, Signe Gaasch.  Signe was diagnosed with brain cancer on August 31st and has received her care in Minneapolis.  Like Signe, Allistaire has had the opportunity to battle cancer only because of the availability of blood in the form of red blood and platelets.  For all of us who feel that there is so little we can tangibly do to help Allistaire, know that giving your blood so that someone else can have a chance at life is a glorious gift that is undeniably well worth your time.  The blood drive, named, “Sangre de Signe,” is being conducted by the American Red Cross.  If you’d like to donate, please follow this link to complete a survey and a representative from the American Red Cross will contact you to schedule an appointment: Blood Drive

Thank you again for all of your prayers, love and support!  Allistaire is mostly back to her happy self.  She is exuberant and laughs and wants to ride bikes.  Last night she painted again for the first time in a while.  I would like to ask you to pray for her attitude during vitals and other times when the nurses have to interact with her.  At night it is especially hard because she screams and yells at them making vitals at midnight and four am a way bigger event than it needs to be.  Please pray that Allistaire would stop fighting them and allow blood pressures, temperature and diaper changes to be conducted peacefully and for skill on the nurses part to be quiet in their responsibilities in the room.  I am amazed at how some nurses can do everything in complete silence, including a diaper change, never waking her up and others just don’t have the knack and then talk to her way too much when all she wants is to be left alone.  As for me, getting sleep in less than 2 hour blocks makes me quite cranky both with Allistaire and the night nurse.  Pray that I would be gracious to the nurses and that I would be able to work with them to clearly communicate our needs and come up with night plans that will maximize sleep.  I am praying too for an uneventful 2-3 weeks as we wait for her blood counts to come up.  Hopefully all will be well and we can head right into transplant.  A number of folks I’ve talked to tell me transplant isn’t great either.  I laugh an empty laugh.  As though I want transplant, but without a transplant Allistaire has no chance to beat this thing.  The hardship of transplant is a gift not all receive. Every single day is a gift that might not be.  So on this gray Monday morning that is supposed to turn sunny, I pray I will make the most of this day, this first day of April – a yellow month – a beautiful month.

As each day passes, it seems to me that the Lord is showing me that everything I need for this life is bound up in the death and resurrection of Jesus Christ.  In those hours and days are contained the truths I need to walk each day.  Easter – the day we focus our hearts and minds on this one most profound reality – resurrection, redemption, overcoming, conquering, rising up.  In every way, I pray for this to be true in my days with Allistaire and as we dwell in this place and this reality.  I pray for the conquering of sickness and death through the redemption of Allistaire’s blood.  I pray for the conquering of sin and death in my own life as I take hold of the redemption Christ has provided me through His blood.