After a night of waking up numerous times and finally asking for pain meds for Allistaire at 2:15 am, I got dressed this morning in the dark, debating with myself whether or not to ask for Allistaire’s ANC before I went to get ready for the day or when I returned.  I had come to the conclusion that I would wait when I saw an unexpected sticky note on the bathroom door, joyously stating in multi-color “ANC: 288.”  The shower this morning was not a place to cry in privacy but a place to praise God over and over with two-word prayers.  Thank you. Thank you.  Thank you.

I light-heartedly walked into Starbucks for my morning bacon gouda breakfast sandwich and grande extra-hot, non-fat, 3 pump, no whip stirred Mocha (yes, I’ve become one of those people.)  The day felt short as Allistaire was already incredibly tired at 11 am.  By 11:30 I was carrying her back to her room, nearly asleep in my arms.  Our nurse confirmed what I had heard from another mom about increased fatigue when counts come up.  After getting Allistaire settled in for bed I asked that I be called on my cell phone when they doctors came by for rounds.  Today’s rounds were not ones I wanted to miss.  We weren’t expecting results back until later this afternoon but I had some pressing questions about the possibility of going home and how I might need to prepare.  A friend of mine had mentioned serious cleaning and carpet cleaning of her home before her little man returned.  I wondered if I needed to prep our house for Allistaire’s impending return.

On a whim I decided to see if Olivier had an opening today for a massage.  Indeed he did and within minutes I was getting my neck and shoulder muscles worked on while we chatted about Olivier’s adventures sailing across the Atlantic in high seas – waves 40-50 feet at times.  My phone rang and I disregarded it.  I must have been lulled by loosened muscles and tales of danger for when I was done I immediately realized that it might have been the nurse calling me to say they were ready for rounds.  I rushed down the elevator and through the double doors just in time to see the doctors about to walk in their office.  They were quick to affirm that they did not have results yet, however, the pathologist thought they would be able to have preliminary results by this afternoon.  The fact that the pathologist believed this was possible encouraged our doctor, Dr. Jessica Pollard, AML guru, that this was a good sign.  She believed that the ability to get a good sample probably indicated a reduction in the fibrosis.  By the way, I keep referring to fibrosis but I don’t know that I’ve ever attempted to explain it.  From what I’ve been told, the cancer cells not only duplicate themselves endlessly, but they also have proteins on their surfaces that produce secretions that in turn produce threads of collagen that create a sticky web like structure in the marrow.  This fibrosis is believed to be largely responsible for the empty nature of the marrow when it was first tested.  More about this shortly.

Elated that I didn’t have to figure out how to get my carpets cleaned in the next 24 hours, I only allowed the bit of hopeful news to linger at the edges of my consciousness.  I sat at the computer and typed, trying to get into words more of my experiences in this strange world that are being used to shape me.  I looked up at the clock over and over.  By 3:45 I figured I could not possibly  concentrate any longer and decided to succumb to the mind-numbing delight of a chocolate old-fashioned doughnut at Starbucks, my second home here. In the elevator my phone rang with the nurse’s number showing up in bold white numbers.  With great trepidation I answered.  Our nurse Emily wanted to let me know she was going to give Allistaire some sort of medicine that helps prevent RSV (a respiratory virus common in young children.)  She just didn’t want to give it to her without me knowing first she said.  Of course, of course, that’s fine I respond; my lower back muscles now absolutely ringing with a tingling nervousness of anticipation, hope and fear.  I had just sat down with my doughnut and ice water when the phone rang again.  Same number.  Same nurse.  “They’re ready to meet with you about Allistaire’s treatment plan,” she says.  My second concise prayer of the day.  Help me God.  Help me God.  Help me God.

I get up to the SCCA Unit and see the doctors down the hall waiting outside our room.  Allistaire was awake so I beckoned them to come to me so that my sweet one wouldn’t see me and insist on my attention.  Right now I needed to give all my focus to whatever words they had to speak to me.  We went to the brown room.  The same little ugly room we sat in as a family just after we learned that Allistaire had AML.  This is the same room in which Sten and I usually eat our dinner together after Allistaire goes to sleep and sometime watch a movie on Netflix.  In this same wee brown room I was about to hear what only the miraculous inventions of science could tell me.

Sten was on phone on speaker as Dr. Pollard began.  These are the results of the tests they are able to complete here in the hospital.  The test is a good test here but not the best.  For the best, the sample was sent out by FedEx where an even more sensitive Flow Cytometry test is performed by one of the best pathologists in the world.  In that place, wherever it is, they are able to use more proteins on the cell to more precisely count the number of each type of cell in the sample. Because of the lovely snow, the sample was delayed in arriving but they believe it should get there by morning and the final conclusive tests completed by tomorrow afternoon.  Here at Seattle Children’s hospital they were able to use their Flow Cytometry test to look at the aspirate (the bloody core of the marrow.)  When this test was first done on an aspirate of Allistaire’s marrow on December 8th, 2011, no cancer cells were located in the marrow.  They were only found in the biopsy.  Today, January 18th, 2012, they did not find any cancer cells in the marrow.  When Dr. Pollard said this I was unclear how this was helpful or a good sign since it seemed to me to be the same results as before.  However, there is a very big difference between this aspirate and the first aspirate.  The first time they didn’t find any cancer cells but that was in part because the marrow was nearly empty; empty of all sorts of cells, good and bad.  Today’s test revealed an aspirate sample full of cells the way marrow is supposed to be, yet with the complete absence of cancer cells.  Dr. Pollard believes that the ability to not only get a good sample but a good sample that shows no leukemia cells is a very positive sign and she is very hopeful that Allistaire is in remission.  However, we must wait until tomorrow for the more precise test results.  Apparently, I misunderstood that the threshold of remission is considered 5% of less blasts.  This was the old parameter when pathologists were only able to rely on the morphology: what they could see under the microscope.  Now with the Flow cytometry test they can detect one individual cell in a thousand or down to .001%.  The newer, more accurate threshold for remission is .1%.  Part of me hates hearing this revised number.  Point one percent seems like an absurdly low number and like a far more challenging goal than 5%.  Apparently, though, they have learned that anything over .1% still poses a high enough risk for the cancer returning/relapse, that if Allistaire is over this threshold, she will likely have to have a bone marrow transplant.

Do not worry about tomorrow for it already has enough trouble it.  Today I will take the delicious news that I long to run over and over in my mind.  Today I take joy that my beloved little Allistaire has far less cancer cells in her body than she did a month ago.  I take exultant joy that her reality is not what I most feared – that the cancer would not only be reduced but would have grown.  At the same time, I wait with held breath for tomorrow and the more conclusive results.

We were told we could go home today if we wanted or we could stay and wait for the results.  We decided that we’d prefer to wait for the results and hear them and discuss them in person.  And of course, it’ll be nice for Sten to go home tonight and turn on the heat so we can return to a comfortable home.  I’ll have to double-check but I think we’ve been here for 40 days.  It is the strangest thing to know that tomorrow night at this time I will be walking barefoot on carpet to get into my own bed.  I will lay down next to my sweet husband and know that Allistaire is still just feet from me, but on the other side of the wall, in her own room, in her own crib.  Tonight she was not hooked up to the IV and tomorrow night no one will even know what her blood pressure is.

Strangely like the disorientation of hearing your child has cancer is the experience of being told that they might be well.  Tonight I thank God for all that He has accomplished.  I thank Him for the ways He has creatively used destruction to bring about life.  I thank Him for the stories and the faces that have become my home and my odd family.  I thank Him for His mercy on us.  We may still have a long hard road, but this afternoon He has lightened our load.  Thanks be to God.

Thank you for all of you who prayed for Allistaire’s bone marrow test today.  The nurse practitioner who did the bone marrow aspirate and biopsy was quite pleased with the biopsy samples she was able to get.  She actually referred to them as “beautiful.”  I asked her what she meant by “beautiful,” and she said that she could feel the fibrosis and possible scar tissue and then was able to find a “sweet spot” where the needle pulled back easily.  The color in the biopsies also showed that the samples she got likely contain the needed components.  She is hopeful that the samples will be sufficient for the pathology tests.  Preliminary results may be available tomorrow if they are able to get results from the aspirate (this is the juicy bloody portion of the marrow).  In the previous two bone marrow tests they were not able to find any cancer cells in the aspirate, perhaps because of the fibrosis.  Results from the biopsy will probably take 2 – 3 days.  My understanding is that once we get results the doctors will discuss with us what are the next steps.  Hopefully from there we will be able to go home for a few days.

Allistaire is doing wonderfully.  After she woke up from the anesthesia, she was quite loopy as in each previous time.  This 30-45 minutes is a bit challenging as she is totally unsure of what she wants and appears tired but doesn’t want to sleep, seems to want to be held but rejects your arms, asks for food but then turns away from every offer.  Thankfully this is short-lived and within an hour she was back riding bikes around the Unit with Piper.  Again, please pray that tonight we would be aware if she is in pain so we can provide for her accordingly.

“Put a sticky note on the bathroom door with her ANC,” I asked the nurse last night.  Labs are drawn every morning at 4 am and they usually only take a few hours to get back.  I woke up at 6 am looking in the dark for the sticky note – there it was in black sharpie: 170.  I knew this would probably mean the bone marrow test would be cancelled for the day.  At 8 am our sweet nurse, Lysen, confirmed that it had been cancelled.  By 9:30 am I was told that the test was scheduled for 2:40 this afternoon and that it would have been earlier if she hadn’t eaten.  Drat!  This was frustrating, confusing and concerning.  I didn’t understand why they would cancel the test and then reschedule all in the course of a few hours – what had transpired to bring about these decisions?  Once again, you try to go about the ordinary tasks of the day to make it through the minutes until there might be answers.  Just get her diaper changed.  Put on her clothes.  Now come the shoes.  Distract her so she doesn’t see the sippy cup and keep asking for milk which she can’t have.  Unwind the IV lines. Walk down the hall.  Pick out a bike.  Make a loop around the unit.  Make another loop.  Mundane task after mundane task just to hold in the fear.  We want to know how Allistaire is doing but it is like willfully making yourself walk into a dark tunnel, not knowing what’s on the other side.

While I did talk to the doctors during rounds, I’m still not totally sure I understand.  This is the best I can do to make sense of things.  The bone marrow test must take place within the time span of between the 28th and 35th day from the start of chemo.  Last Wednesday was the 28th day and tomorrow is the 35th day.  They want the blood counts to be up high enough so that there is something for them to actually look at when they test it, however, they must also have time parameters because blood counts are constantly changing and they need to have some standard against which to test things.  I’m sure it is more complicated and nuanced than this and thus above my head.  They decided that because her ANC has been close to 200 three times (175, 174, 170) and because tomorrow is the 35th day they are going to go ahead and do the test today.  I asked them several times to be honest with me if they have any concerns.  They say no, they do not have concerns, and they say they have no way of knowing if there are concerns without looking in the marrow.  So all of this to say, it seems that Allistaire’s counts and the bouncing around of the ANC is normal but at the same time they need to do the test within this particular time frame.  The little girl down the hall who also has AML started her chemo two weeks later than us and has already had her ANC start to come up a tiny bit.  I guess everyone is just different.  Also, as some means of encouragement, the intern doctor said that Allistaire’s platelets are “gorgeous.”

Please pray for Allistaire while she is under for her test.  Pray especially that they are able to get good and sufficient samples of her marrow as they has been a major challenge the previous two times.  Pray that she won’t be in too much pain and that we will know if she is so we can give her more meds.  Please pray for Sten and I, pray for all of us whose hearts are bound tight to Allistaire that God would uphold us regardless of what news we get.  Preliminary results could come tomorrow afternoon but if they have challenges with the sample as before, it would be another day or two.  Regardless, complete results will probably be about 3 days away.

Here are some fun pictures from our morning.  We’ve had the delight of snow the last few days and have enjoyed gazing out the window at its repetitive, lulling, peaceful beauty.  You will also get to see some  neighbors of our’s on the Unit who have become cherished friends.  Little Rowan is the 9 month old baby boy in the stroller with his mom Meagan.  Piper is our 7-year-old neighbor and AML pal.  Allistaire said Piper for the first time today.  Lastly, you will see Waldo on the new construction portion of the hospital.  He moves around each day and the kids get some sort of prize for finding him.  Today we had the fortune of seeing him up close.

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I stripped Allistaire down to get her ready for a bath.  The water ran in the bathtub and Allistaire stood outside the tub showing off her fantastic curves, of which there are many.  As I sat there admiring her rotund glory, it dawned on me that she kind of looked like the color of a macaroni noodle.  That’s strange I thought.  Lately I had also noticed that her lips looked gray when I would put her in her carseat.  It’s probably just the tinted window.  Over and over I was able to explain away what I was seeing.  A day later, however, the older women folk who care for the kids at the Bible Study I attend, agreed that she looked yellow and had actually thought so the week before.  Emboldened by this affirmation, I determined to get Allistaire into the doctor.  Her pediatrician took one look at Allistaire and said she was incredibly anemic.  Within 10 minutes I first heard the word Leukemia uttered in connection to my child.

Two or three days, that’s how long Allistaire would have lived without getting a transfusion of blood.  I asked Dr. Johnson, how long would Allistaire be able to live with a hematocrit (red blood cell count) of 9 without getting more blood.  When she said 2 or 3 days I was horrified.  “What if I hadn’t brought her in,” I asked with terror.  “Oh, you would have brought her in, she would have gotten worse,” was the response.  Allistaire was living with only 25% of the red blood cells she needed.  Her heart was strained, pumping so hard and fast to get the little bit of blood to circulate throughout her body.  That first little package of blood took 4 hours to be transfused into her so as to not overwhelm her heart.  They told us that the blood would perk her up.  At 3 in the morning we were shocked to witness a giddy, playful, happy little Allistaire standing and talking in her crib.  Only hours earlier her expression was flat, her thumb never left her mouth and all she wanted to do was to be held and sleep if possible.  It was as though someone had pushed a button and brought her from death to life.  Only days ago did I learn how literally this was true.

Since that first little “pedi pack” of blood, Allistaire has had 12 additional packs of blood and 3 transfusions of platelets.  Allistaire could die from cancer, but she most assuredly would have died without getting more blood.  She has no shot of being cured from cancer without having her life sustained and supported by additional blood in the mean time.  You might have an idea of where this is going.  Yes, I’m asking you to seriously consider donating blood.  No, I’m asking you to donate blood.  We may know in our minds that when we donate blood is it helps someone else.  Here’s the deal, Allistaire IS actually alive because someone donated blood.  This is not some abstract concept, so don’t let it be an abstraction.  Are you a mom?  Look at your child’s face and imagine that you have the ability to save your child’s life by giving a tiny bit of yours away – a tiny bit that you can get back.  Are you a grandma?  Look at your grandchild.  Are you a husband?  Look at your wife.  Are you a friend?  Are you a co-worker?  Look at the faces of those around you and know, that though it might not be their flesh that your blood will sustain, the person whose life is sustained by your blood is just as real and precious as they are.  You and I are probably not the folks who will find the cure for cancer.  Such a quest is utterly daunting and we think, what in the world can we do about cancer?  It is easy to feel defeated and become cynical.  Yet here is this wondrous way that we actually all have a magical substance that can save a life.  What is the cost to you?  Absurdly little.  It will cost you about 45 minutes of your time and the tiniest bit of pain – all that in exchange for Allistaire staying alive.  In my estimation, that is a worthy trade-off.

Contact Puget Sound Blood Center to learn more about donating blood and to set up a time to donate.

If you live outside of the Puget Sound area, take a few minutes and track down where you can donate blood in your area.

Here’s the update on Allistaire:  She continues to do great and bring joy to everyone on the unit with her silly eyes, jovial spinning sessions, bike riding antics and unending sweetness.  Her ANC (Absolute Neutrophil Count) is tauntingly bouncing around.  Yesterday it was 174 and today it is 50.  She needs to have an ANC of 200 to be ready to have her bone marrow test and be released from the hospital for a few days.  As far as I know, the test is still scheduled for tomorrow afternoon.

Solveig’s fever seems to have passed, and while she continues to need a nap each day, her spirit is joyful.  We are still trying to wait and see what will happen with Allistaire and make sure Solveig fully recovers before we decide exactly when I should head to Montana to visit.

Just got me some blood - Yeeha! (December 2, 2011)

I went to bed way too late and got up early this morning in preparation for Allistaire’s bone marrow test that was scheduled for 9:30am.  On my way to the shower I asked the nurse if Allistaire’s labs had come back.  BLAST!  Her ANC had dropped to 74.  I knew this meant that they would likely cancel the procedure and reschedule for Tuesday.  When I returned, this was confirmed.  No test.  Gotta wait longer.  Ugh!

Last night, I went to wash up dishes from Sten and I eating some tasty baked Ziti (thanks Kaitlyn and Tracie).  I once again got caught up talking to one of the parents in the kitchenette.  This dad has been here with his 9 year old son since June.  His son also has AML and has FLT3.  He had his transplant in September and has had an insane ride.  His dad told me all about the saga, the tongue so swollen that the end sloughed off, the 108 degree fever that actually burned his skin, the scary virus after scary virus.  I asked him how does he do it – how does he survive.  His advice to me was this:  don’t get too happy, don’t get too upset, find a good middle ground.  When he said this my brain accepted it as a reasonable idea.

This morning when the test was cancelled and I felt the tug to be upset about it I remembered this dad’s words.  I think he’s right.  Things just change constantly here, it is the norm.  Every day we test so many precise little things going on inside our child’s body – their temperature, blood pressure, weight, hematocrit, white blood cell count, platelet count, how much phosphorus, how much calcium, etc.  These numbers are important, but like a lot of things in this world, there is constant fluctuation.  To use the words of my dear friend Kirsten who visited this morning, “if you ride every high and every low, your adrenal glands will just explode.”  (Kirsten is a neonatal nurse at Swedish by the way and I take her at her word 🙂 )  As one who is by nature a planner, this sort of world is not at all conducive to the way I want things to go.  But wouldn’t it be amazing if on the other side of all this someone might actually describe me as “easy going.”  Anyone who knows me would never use this descriptor for me.  It makes me laugh out loud just to imagine.  But really, it would be wonderful.

Thanks to those of you who have prayed for Solveig.  She still has a slight fever but her cough is better and her cheeriness is returning.  Tonight we used Skype to talk with Solveig on JoMarie’s (Sten’s mom) computer.  Even though there is terrible lag time and the picture isn’t the clearest, it was so fun to see Solveig’s sweet silly face and see all her expressions.  She and Allistaire laughed at each other.  It was great to be together as a family of four, if even in this very limited way.

Desperate to get out, to find a place to be alone.  Think – which set of elevators, which hall, where can I go?  Allistaire is asleep in her room and I cannot possibly stay on the Unit; too many familiar faces, knowing eyes, empathy that invites you to let go and I just can’t.  I just need to be alone.  Even the bathrooms open into the busy hallway of the Unit.  A few inches of distance with a gap around the door letting in the light – the bathroom is not an option.  I walk hurriedly with eyes cast down so the red and swimming blue won’t be seen.  I know what it’s like when you see another parent with that look on their faces, it makes it harder for you to maintain your composure, to act like everything is okay.  Because just below the surface is that great immense depth of sorrow that you will be cast back into.

What’s the big deal.  Today is just another day really.  Allistaire is fine.  She’s doing great really.  But I know it doesn’t ultimately mean anything.  It doesn’t declare what’s going on inside her flesh.  This morning I had to change her dressing with the support and oversight of the Home Care Services folks.  Austin, one of the Child Life Specialists, was on hand to help distract Allistaire with the iPad. I went slowly from one step to another, preparing the surface, washing my hands for 30 seconds, putting on Purell, putting on the non-sterile gloves, unwrapping the sterile package and removing the package of sterile gloves.  Everything was ready and we laid Allistiare in the crib on the blanket straight from the warmer.  The peace only lasted a moment.  As soon as I began to remove the dressing, she began to cry.  They held both of her arms down, while another nurse held her head away from where I was working.  Allistaire screamed loud and screamed silent, back arching in fear.  I worked with trembling hands, heat moving up my neck.  Once I had the old dressing off it was time to put on the sterile gloves.  It took me three pairs to get them on right without contaminating one of the gloves in the process.  All the while they hold her down because she is now exposed and they can’t risk her grabbing at her lines.  I begin cleaning the area with 3 special swabs, 10 seconds each.  It’s cold and smells scary of chemicals.  Each swab begins with dabbing gently around where the line comes out of her chest- this tender place with black foreign stitches.  We stand there and wait while her skin dries and Allistaire writhes. I place the new bio-patch around the line and begin a different type of swab that creates a microscopic film on her skin so that the next time we remove the dressing it will rip the film and not her skin.  Just as I’m almost done with this, I accidentally touch the tip of the swab on the nurse’ finger where she firmly holds Allistaire’s jaw away from her chest and I continue to swab for a brief fraction of a second before I realize what I’ve done.  I’ve contaminated the area where the new dressing was about to go and I have to start all over.  I can feel the tears rising, threatening to overwhelm.  I must get through this.  I go again through each step and at last the dressing is placed and I gather Allistaire in my arms.  She folds into me and tucks her head in the safe place between my neck and shoulder.  I hold her and hold her and cry and cry.  Everyone moves around me.  Throwing away the packages, washing hands, gathering their things.  I stand in the midst holding my precious one, the immense saddness welling up and over, flooding down all around me.

Somehow this changing of her dressing, the holding her down, the arching of her back and relentless cries, well, they are really the only and, therefore, the very tangible, expression of Allistaire’s own pain and fear.  The rest of her time and days are spent doing pretty normal things; things that at least have become normal.  The look of terror in her eyes as they look into my eyes, is like the icy tip of the iceberg exposing the vast reality below.  Not long later we were out walking the halls as Allistaire rode her most recent favorite scooter and rocket ship.  Allistaire was mostly back to her cheery self but my sadness lay just below, constantly like water, looking for a crack through which to flow unhindered.  We rounded a corner and the intercom declared “Code Blue;” the red light was on over the bathroom door and the staff came running from all directions.  We kept moving to get out of the way.  I watched their strained faces flash by as they willed their bodies to respond with rushing speed.  It was a false alarm.  The person was okay.  Yet the crack was found and I felt the tremendous pressure of the wild sorrow demanding to be released.  What am I doing here in a place where death is ever at the door?  This is not a place where we have a cheerful, colorful room with floor to ceiling windows.  This is not a place where Allistaire giggles and makes “silly eyes,” and plays endlessly on the bikes and is declared the cutest little one over and over.  This is not the place where I have packages delivered and I heat up food for dinner.  This is a place where death is the foe.  We are not fighting sickness.  We are fighting death.  Death, wretched death.  I am fighting someone who stands guard in the corner of the room demanding over and over to take Allistaire away from me; to steal her away so that I will never hold her again.  But she’s dear to me I scream.  Can’t you see how much I love her?  Don’t you know how long I longed for her?  I had a miscarriage between Solveig and Allistaire and for months I fought the fear and sadness of what it might mean to not have another child.  Having Solveig in our life showed us the joy and wonder it is to experience another little life, to add life to life and I could not imagine for our own sake and for Solveig’s, having an only child.  I prayed so much for another child.  I found out I was pregnant with Allistaire the day I would have been due with the other baby.  Around the time Allistaire was one, I realized that if that other baby had lived I wouldn’t have Allistaire.  I would have another child.  And I thanked God for this little beautiful one.  No matter how much love I have for Allistaire, it has no capacity to hold her to me.  My love for her cannot prevent death from prying her from my hands.  And I hate this, it is a ripping, stinging, sharp and deep pain.  I know everything probably feels amplified right now because her bone marrow draw is schedule for tomorrow morning.  It feels like the course of my life is hanging there on the tip of the sharp tiny point of the results of that test.

Allistaire’s ANC is up to 175 today which means it could very possibly be up to or over 200 tomorrow.  The doctors told me they will have to have test results back before they would let us go home, if they let us go home.  If she’s in remission (less than 5% blasts), we can go home for a few days.  If she’s not, we’ll have to discuss things they said.

I’m sitting in the Family Resource center in the most private chair that I can find.  To my left out the window, over the treed hill of University District, I see the snowy, jagged ridge of the top of the Brothers (in the Olympic Mountains).  I don’t have words for a prayer.  I sit slumped in this generic chair in an ordinary room.  Ola Podrida plays again on my iPod.  The thin red line telling me the battery will run out at any moment.  My favorite song is on and I know that in moments I will hear that liquid light, that yellow sheer sound I love.  This morning while Allistaire ate her breakfast she watched one of her Christmas Veggie Tales videos.  I wasn’t paying attention as I cleaned up the room.  “And unto you a savior is born.”  Those were the words I heard.  I need saving.  I am ever on the verge of going down and I cry out over and over, “Lord, catch me, I’m going down.”  Here His great arm reaches to me, grasps my forearm and lifts me.

Lest I leave you with only sadness, let me add this.  My face is aching and my eyes tired and puffy.  A headache has threatened all day.  This is why I try so hard not to cry.  I suffer all day for it.  What makes this all so strange is the way in which great joy and delight sits right along side sickness and possible death.  Yes, I’m weary from sadness but I keep having this sweet little face and breathy little voice, and wiggly little adorable body declare to me over and over, “Look Mommy, I’m alive, I’m alive and isn’t there just so much to rejoice in and delight in?”  So tonight I leave you with my first videos taken with my iPhone – no editing, just raw life with our little beloved Allistaire today.  (By the way, while the videos are vertical in my iPhoto, they’re showing up annoying and horizontal here.  Sorry, I’m still going to post them.  I’ll attempt to figure it out tomorrow.)  And thanks to Jenny and Leo for the beautiful little hat.  She was already dressed for the day.  The nurse delivered it right after the dressing change and how fabulous the way it matches!

And the Gold Medal goes to……Leesa!!!

I did not wake up one time last night.  I rose from consciousness of my own accord at 7:22 am.  I actually had to look at the clock three times to see if I had read it correctly.  That’s right, I slept 8 straight hours!  I literally could hardly believe it and it made want to go hug Leesa our nurse who managed to be the ultimate stealth Ninja.  Her strategy was to give Allistaire a sippy cup of milk while she was drawing labs at 4am.  I actually smiled my way out of the Unit to the shower this morning.

And as if this were not enough – Allistaire’s ANC went up to 46, after having dropped to zero again yesterday. Yeah Yeah Yeah!  And (yes, there will be a lot of “and”s in this post) Allistaire’s platelets are up to 176!!!!  To put that in perspective, she gets a transfusion of platelets when she drops to 10 which she has done several times in the last month.  To reach 176 feels like soaring into the blue black of space after living so long in a deep ravine.

AND it’s Sten’s birthday!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  I wanted to type out 31 exclamation points in joyful celebration of his 31 years.  The other day I was bemoaning the fact that I have no present for him and no fancy fun plans to celebrate his birthday.  His response was that, well, this is our reality right now and we don’t need to and can’t really make celebrating a priority.  In the moment I agreed, but then at some point as I was attempting to drift off to sleep last night I thought, NO, you know what, we are going to make birthdays an even bigger celebration in our lives because it IS a BIG DEAL that we have been given a whole additional year of LIFE!  That is absolutely worth celebrating and making a big deal out of.  So’s here’s where I wish I could say we have awesome plans tonight.  We don’t and that’ll be okay.  We’ll figure out how and when to do that in the next few weeks.  But still, give thanks for the day!  One more day to live life.  I sure feel redundant but I just know that this is part of the refining God wants to do in me – to jar me into realizing that there is SO much to be thankful for.  This morning as I was getting ready and doing my hair after my shower I noticed that after only 2 weeks of having my hair colored there was already the hint of grow-out.  My first response was to be bummed and frustrated but then I thought, THANK GOD I HAVE HAIR THAT GROWS!  Why am I using so many caps – I just feel like I have to find a way, I so want to learn how to look for the beauty, the wonder, the joy, the good, the true, the abundance that is constantly available to me but I can so easily disregard.  And right now, I am so thankful for my sweet, kind, handsome, smarty-pants, hard working, nature-loving, thoughtful, fun loving, strong, ample provider husband – Sten Karl and all 31 years the Lord has blessed him with!

I have to go because the nurse just called to say Allistaire is up from her nap.  Just one more thing.  Please continue to pray for Solveig who had a fever again this morning.  Thankfully she slept well but her temperature was 100.5.  This means I have to postpone my trip to visit her again.  We’re hoping I can go next Wednesday night through Sunday afternoon.

Not much too say today except that Allistaire’s ANC moved for the first time up from zero.  Today it was 30.  Who can know what it’ll do – the fellow actually said it could take as long as a month to get to 200.  I had no idea that was even possible.  I’m just so thankful we have motion!

Please also pray for Solveig.  I was hoping/planning to head to Bozeman in the next few days for a visit with her but she has a fever today and there’s no way I can intentionally expose myself to that sort of sickness and then possibly pass it on to Allistaire.  Pray that no one else in Sten’s family gets sick either.

We are constantly reminded that we cannot know what the future holds.  As I wiped the counter in Allistaire’s room tonight I thought, hmmm, Allistaire will likely have to tell any future love that she might not be able to have kids because she had cancer when she’s little.  She may have a heavy burden to carry that way.  Why this came to mind while wiping the counter I have no idea.  But there’s no use expending fear or worry over it.  Today we have Allistaire and so so much more.  It is so hard to live with all your ultimate hopes resting in some future time and place and be fully present to the moment as well.  Whatever comes, I pray God will have brought about a permanent change in me.  I hope I truly become a different sort of person, one who can dwell fully in the present and relish it while resting my long term hopes and needs in God.  Again and again in little ways that ultimately accumulate and amount to big ways, the Lord is offering me to live a life in which I rest the weighty things of this life in His hands and in so doing am freed up to more fully engage in and labor in the moment.

I’m back at the hospital tonight after three nights away.  Wednesday I was taken down by a menacing headache that would not relent until yesterday afternoon.  In an attempt to combat the wretched pain I went home to sleep in my own bed Wednesday night.  I did everything I could think of to stop it – various medicines, heating pad, careful sleeping positions, caffeine, lots of water, cereal and milk – nothing even touched it.  Thursday I had the fortune of having made an appointment with the massage therapist who provides free 20 minute neck and shoulder massages to caregivers of patients. (I keep having to remind myself that nothing here is really free – I didn’t go to the store and buy the diapers and I didn’t hand over cash to the massage therapist but at $6,500 per night room fee, nothing here is free.  Yes, you read that right – we are billed $6,500 every night we’re here – crazy!!!).  But I do thank the Lord for whoever deemed it a good idea to employ a massage therapist because this mighty Belgian man was able to work my muscles such that my apparently out of place rib was prompted back into place.  As Thursday turned to evening I felt the pain subside.  Yet once again as I slept Thursday night at the hospital and awoke on Friday, the pain was back but had shifted to the other side of my body.  I have to say that fluorescent lights and beeping machines are a special form of torture.

Friday afternoon Sten and I had a scheduled appointment with the Home Care Services agency that provides all of the supplies we will need to care for Allistaire in the days that we get to be at home.  They also train us how to care for her; specifically how to keep her Hickman Catheter in good working condition by flushing both lines once each day and changing  the caps twice a week.  We began working on learning to change her dressing that covers and protects her Hickman Catheter as well.  For me everything about those 2 hours Friday afternoon was brutal.  The thee obnoxiously loud ticking clocks all in one room, the crushing beams of fluorescent light and most significantly what we were learning to do.  I told the nurse flat out I didn’t want to learn to change Allistaire’s dressing.  Everything about it overwhelms me.  It’s not really that it’s so hard it’s just the weight of the responsibility – Allistaire might not die from cancer – instead she could quite literally die from an infection in her line as I have heard of happening with several kids.  I can walk and carry five bags at a time, I know how to do fancy wire wrapping in jewelry making, I can play the piano, I can draw and paint – it’s not an issue of hand-eye coordination or fine motor skills – I’ve got these.  It’s the little innocent oops of a non-sterile part accidentally touching a sterile part and knowing that this could be the way an invader could enter Allistaire’s little defenseless body and take her down.  I don’t want that responsibility.  I doesn’t matter if I want it – it’s mine and the nurse made that clear.  So Sten and I practiced several times all the specific careful little steps to do our best to minimize the risk of infection.  Tomorrow we practice again and then give it a try on Allistaire.  I should point out that all our practicing takes place on Chester – the torso man who has a special little hole in his chest that allows you to compress the syringe and push the liquid through and into his line – he’s a good sport really.

After our class I was off to meet up with my friend Hanna for our 3rd annual tradition of traveling to and attending our church’s women’s retreat together.  I was reminded as I set out to meet her that Allistaire has made her presence quite known all three years of the women’s retreat.  The first year we were at a lodge near Snoqualmie Pass and it was a lovely and very snowy weekend.  To get to the lodge we had to create a narrow little path through the snow up the hill.  So narrow was the path that it really only accommodated travel in one direction.  At some point I was waiting on this wee path and someone needed to get by, I attempted to arch my back and make most of my body move out of the way of the oncommer.  Alas, with a great pregnant belly, my balance was totally off and I nearly made a “with-child” snow angel.  The second year I was pumping 5 times a day to provide Allistaire with needed breast milk and to keep up my supply.  This year her silent weighty presence went with me everywhere.  My raging headache continued unabated and when Saturday morning came with no relent I decided to stay in that  bed until the pain went away.  Thanks to Hanna’s natural sweet hearted nursing abilities, I was supplied with all I could ask for – orange juice and a tasty biscuit, cold cups of coke and most importantly – drugs.  Someone at the retreat had some fabulous sinus medication that at last knocked through the cycle of pain and brought me back to myself.  Though I was disappointed to have missed so much opportunity of getting to know and talking with ladies in our church which has been the best part of these retreats in previous years, I was thankful for getting out from under the oppression of that headache and for all the good quiet hours I had to talk with Hanna.  I realized too, that part of me felt the need to largely avoid most everyone else.  To not talk about the present reality of what’s going on in our life with Allistaire feels false and lacking authenticity, however, bringing it up over and over felt like a pity party waiting to happen and great vats of awkwardness.  Though it was not what I had looked forward to, it was in the end a good weekend under the circumstances.  While I was away, my sweet dad came to stay with Allistaire once again.  This gave Sten some time away alone and a chance to take a good long hard run – things he needs – to be outside, to exert himself and release some stress.  It was a blessing for both of us and it seemed when we returned that Dad and Allistaire had had a delightful time together.  Both a nurse and the front desk Unit Coordinator commented to me what a sweet dad I have and how he clearly does so well with Allistaire.  I love my Pops so much and I’m thankful for this special time he and Allistaire have had together.

Allistaire herself is doing remarkably well.  Her spirit and strength seem to be making great strides forward.  In the past several days she has started to squeal and shriek with delight, she actually rode the bike around and around and around the unit today and she is eating and drinking so much better. Her weight actually reached 12.5 kg on Saturday which is higher than it’s ever been since we came to this room exactly 30 days ago.  It is such a joy to see her vigorous little being bursting forth.  It seems these may be outward signs of the recovery that is taking place in her body.  On Thursday afternoon when I got the call from the Home Care Services folks about setting up an appointment for Friday I told them that it really wasn’t an ideal time and that since we’re going to be here a while longer I asked if we could push the training back to this coming week.  I was told that because we’re going home early this week that they really need to get the training in for us.  When she said those words about going home I was completely confused because no one had said anything about this to me and there was absolutely no indication that the time to leave was nearing as far as I knew.  After several conversations I was able to track down the source of this rumor.  Apparently on Thursday Allistaire’s monocyte count rose up from zero which can be an indicator that the ANC (Absolute Neutrophil Count) is not far behind.  On Friday, her monocyte count went back to zero but both yesterday and today it has begun to rise again.  While her ANC still remains at zero where it has been for the last 17 days, it is likely that we may soon see it rise above zero.  How long it will take to get to 200 is really unknown as some kid’s level rises steadily while for other kids their level goes up and down and up and down before it finally reaches that golden number.  So we wait some more.

We still don’t really know exactly what the days ahead will look like.  We don’t know when her ANC will get to 200.  The bone marrow draw may be scheduled for this Thursday, 1/12, but that is still uncertain.  We don’t know how long we’ll be at home but more than likely it’ll only be a few days.  This means we really don’t know when she’ll start her second round of chemo.  Of all the unknowns we find ourselves most awaiting the results of that all important bone marrow test.  It will determine a lot about the months ahead.  Please pray for us.  Please keep lifting us up.  Pray that the Lord will sustain us no matter what the results of this test.  It is one thing to learn that your child has cancer and that you have to disrupt your whole life to focus in on doing whatever it takes to save their life, but what if all the big guns have had no effect, or not enough of an impact to bring about the destruction of those insidious cells?  To me, walking day by day, closer and closer to that test feels like the scariest part so far.  On the Saturday morning that we carried Allistaire down the halls and into the room where she would get her CAT scan I felt as though I had a sense of what it would feel like to walk to your death.  In all those movie images of the criminal or the innocent walking to their execution, i felt my hair raise with tingling of feeling like we were possibly walking into a great suffocating blackness.  What if her body was full of tumors – what if the cancer was everywhere and there was really no chance to save her?  Praise God that wasn’t the case, but here we are again, putting one foot in front of the other, knowing that as the week begins and moves along, one day after another, we slowly move closer to that great unknown and possible terror.  We know that test is there, looming just out of the corner of our eye,  but we keep our eyes on our feet willing them to keep walking forward.  Please pray for Sten and I.  Pray for my mom and my dad, for my brother and sister-in-law, for Sten’s mom and dad, for his brothers and wives, for all of us whose daily lives know the joy of having Allistaire with us and the great swamping fear of sorrow that would come if she were taken from us.  We need you God.  I need you so bad to hold me up.  Every day that goes by that I’m here with Allistaire I love her more and more, I delight in her more and more, she becomes more and more knit into me and I don’t know how it would be if she were gone.  We know that though we absolutely love to see Allistaire’s singing glorious spirit, it does not tell us what is going on inside her flesh, and it only makes the pain of her possible loss so much greater.