The nurse came out of Allistaire’s room yesterday saying she was awake from her nap and that she had played with all the buttons on the IV pole and then somehow partially disconnected her tubing so that blood had begun to leak out.  Thankfully it was only a very small amount compared to the pool of blood from months ago.  She said that the blood had backed up in the line but that fortunately it hadn’t clotted off.  At midnight Allistaire called out to me from her crib.  I went to check and saw that the IV pump said “emergency stop.”  I called the nurse who came in to discover that Allistaire had attempted to pull the tubing cartridges out of the IV pump and turned on the other unused med pump.  At 5am this morning she called out to me again.  This time her line had completely disconnected, though probably on accident from all of her turning in her sleep.  The bag of TPN had to be discarded because of potential contamination.  They only make TPN once a day so for now she is on saline and will be getting electrolytes until this evening when she can have a new bag of TPN.  Several other times the IV pump alarmed in the night because of “distal occlusion, ” my most hated of all the alarm sounds as it gets louder and more obnoxious if you don’t attend to it soon.  This just means there’s a kink in the line somewhere, but it wakes you up regardless even if the solution takes 10 seconds.  Can I just say I am SO ready to have Allistaire disconnected from these tubes forever!

On Friday Allistaire and I were escorted off of the Unit to go to the Cardiology Unit for her to have the Echocardiogram and EKG.  We were also escorted back and when the nurse badged in through the double doors, Allistaire began to scream and refuse to walk any further.  When I picked her up, she flailed her hands, hitting me in the face and screaming all the more.  She was apparently extremely unhappy about having to go back in.  I had no idea she was even aware of what going in those doors means for her.  It hurt my heart and I tried to reassure her that it wouldn’t be too much longer before we can go.  Last night as we were waiting for new tubing to be hooked up, I urged Allistaire to drink her milk.  She had no interest.  I told her that she had to drink her milk so that we could go Bye Bye home and be all done with her tubies.  She looked at me imploringly and asked, “Bye bye soon?”  “Home?”  “Yes, sweet girl, bye bye home soon,” I responded with aching heart.  She raised the sippy cup to her mouth and downed the whole thing in a few short minutes.  Then she began to push back the blankets and sit up, thinking now was the time to go.

This morning Allistaire’s ANC is 222, just above the hallowed number of 200.  While she was completely taken off her morphine yesterday, she is still supposed to be on 16 hours of TPN as of today.  I’m hoping in rounds today to find out how many more days to ween off of TPN. I don’t know what their expectations are for her eating.  She still isn’t eating a lot but she had several jars of baby food yesterday and actually joyfully fed herself one in the evening after a bit of prompting.  Also, now that her ANC is over 200, I anticipate they will take her off the antibiotics.  Yesterday evening was really joy upon joy.  Once the nurse had Allistaire all cleaned up from her nap she released her down the hall to me where I was talking with some folks by the front desk.  Because she was off morphine and only had 20 hours of TPN, it meant that she had 4 sweet hours of complete freedom.  Allistaire ran to me, unfettered, down the hall and I nearly burst into tears as I swept her up, seeing that my little beloved, gleeful Allistaire was returning to me.  She played nonstop from 5:30 to 7:50 when I decided I had to have her stop to try and get some food in her before bed.  She had an absolutely delightful time playing with crazy cat Piper and Chris’s little sister Alexa who was especially sweet with her.  Chris is a 22 year old hokey player who was told he couldn’t go back on the ice until he went to the doctor.  He didn’t even think he was sick but it turned out that he too has AML.  We visited with Ruby who is nearly 18 and discussed the possibility of putting on some sort of prom on the Unit since she will be missing hers at school.  It was a lovely evening and fun to be out of the room and hanging out with so many people we love.  Our little posse that was cruising the halls actually got shooshed a few times by a bit of a sensative nurse.  I felt like saying back that shouldn’t we instead be all the louder for were we not declaring the victory of life over that which has sought to drag us all down.  Truly, had there been a grassy field, I might have started skipping and scattering flowers.

Father God, Master of the heavens and the earth, you have been SO good to us.  You have provided abundantly for us at so very many points.  I sit here on a stormy spring morning, the gray clouds rushing by and the sweet brilliant green of new life clinging to trees and bushes everywhere contrasted against the dark sky.  I wish I could boast that we are done with this forever and ever, but this is not promised me. But the life of my child has been extended and I have been transformed.  New life has sprung up in me.  Father, you brutal God who is willing to count high costs for life, true life, abundant life, eternal life. You who sacrificed the life of your own son, knowing it would bring about not only His resurrection from the dead but hope for all of us that we too might not be defeated by death but rise up and taste the sweet richness of a life lived with you both here and now and forevermore.

I cannot believe we are at this point.  I really, truly, seriously cannot believe that Allistaire’s ANC is on the rise and our time at the hospital and this cancer journey is mostly coming to a close.

ANC:  Sunday – 0;  Monday – 7;  Tuesday – 20;   Wednesday – 66

Morphine Drip:  Saturday – 10;  Sunday – 10 then up to 15;  Monday – 15 then up to 20;  Tuesday – 20;  Wednesday – 15

Tuesday Allistaire ate 3 jars of baby food and 2 pieces of cheddar cheese.  Today she ate 1/2 jar of baby food and 1 1/2 pieces of cheddar cheese

Tonight Allistaire rode bikes, did some wiggle bottom moves, attempted to spin (though was hampered by tubes), talked sweetly to her doggie and bunny at bed time telling them that she loves them.

She is so very muchon the mend!  Yeah!

We’ll see what the coming days hold.  I’m honestly hoping we stay here through the weekend rather than being at our house where hopefully throngs of people will come to see our house and want to put in competing cash offers.  Okay, so the latter part probably won’t happen, but it would be a whole lot easier to be away from our house for one more weekend rather than trying to keep it clean and available at a moments notice with a 2-year-old who is still sleeping about 18 hours per day.  That is not an exaggeration.  She has been going to bed around 9 pm and getting up near 11 am and then taking a four-hour nap every afternoon.

I am in the process of gathering the names and faces of all those who have been such a part of our lives here.  I have more documenting to do before we gone.

I know many of you are wondering what the next steps are.  I don’t know exactly and honestly it is exhausting to try to plan things based on so many unknown things that are outside of our control.  But here are the basics as I know them:

Once Allistaire’s ANC gets to 200 and she is off TPN and Morphine, she can leave the hospital.

When her ANC is somewhere between 200-500 (hopefully closer to 500), she will have her very last bone marrow test.  Results will take about 2 days to get back.  She will not need to have another bone marrow test unless her Blood Counts from a monthly blood test show anything concerning.

I imagine we will have to go into clinic a few times to have blood counts checked and just to make sure she is doing okay.

They only have 2 appointment slots on Tuesdays to take lines out so we will be scheduled for that at some time in the next several weeks.

Once her line is out, we will simply have monthly blood tests, maybe a clinic visit as well.

We were told long ago that they would probably like to see us back here at Children’s on a quarterly basis so we will look forward to yet another compelling reason to come back for visits.

As for when we move to Montana completely, that is largely dependent on the sale of our house.  Of course we hope it is very soon so that we can all be together as a family again, but we will just have to wait and see.

For now, I realize I feel a bit homeless.  I am about to leave the place that has primarily been my home for the last five months.  Our house in Kent is less and less our home as now I don’t feel as able to just let loose there, knowing that it needs to be in showable condition at nearly any moment.  It is still hard to imagine Bozeman as home and we will not even be able to move into Meadow house until after August 1st.  I confess I feel so very weary of being a nomad, of taking my shampoo in and out of a bag every day.  I am tired of living out of a bag.  I am tired of being with people nearly 100% of the time.  I look forward to being quiet and alone and at rest in the ordinariness of daily life.  I so wish that leaving here meant that I was returning or even entering a more settled life but that will not be the case for several more months.  How can I not be anything but simply and utterly grateful to God?  I am full of gratitude but it is a wearied thanks and a thanks that is in many ways, still in its seed like form, waiting to expand and grow and rise up and become full.

I had to apologize to Dr. Fong the other day.  I told him I was sorry for my unenthusiastic response when he suggested the possibility of a feeding tube earlier last week.  After having time to reflect, it came to me that feeding Allistaire and keeping her weight up has felt like a battle I have been fighting for a very long time.  So far, I had been able to keep the enemy at bay.  When Dr. Fong made it clear a feeding tube may be necessary soon, it felt like he just walked up and told me I had to admit defeat.  This was my gut response but I thank God for working in my heart and mind and showing me that a feeding tube does not signal defeat, but rather the wisdom of applying a different strategy for a different situation.  Thankfully, however, at this point we have the lovely option of TPN rather than a feeding tube.  TPN stands for Total Parenteral Nutrition.  I contains glucose, amino acids, vitamins and dietary minerals.  It will be given to her intravenously and is for now the better option because of Allistaire’s mucositis in her digestive tract.  She will also receive lipids which is essentially fats and looks like a bag of the purest white cream you can imagine.  She can and will still eat, she just doesn’t have to rely on her limited food intake to satisfy her nutritional and caloric needs.

Another big change is that Allistaire is now on a morphine drip which continuously provides low levels of morphine in her body to help with the pain.  I am so thankful for this solution to Allistaire’s pain.  The last several nights I had repeated discussions with the nurses on how to best address Allistaire’s apparent pain.  Yesterday afternoon it was finally decided that a morphine drip was the best course of action.  Prior to this decision, as I was getting ready to leave the hospital yesterday, Allistaire was a complete wreck.  She was unbelievable grumpy and at times crying hysterically.  Nothing pleased her.  Thankfully she has been in a better mood.

Only a slightly over a week ago, Allistaire was running around, riding bikes, eating, laughing, and playing.  She was the Allistaire we know and love.  She was done with chemo and didn’t have to be hooked up at all.  She wandered the Unit unfettered and joyous.  Since then she has had diarrhea, vomiting, fever and pain.  She now requires IV fluids, antibiotics, morphine, TPN and lipids.  The truth is, there has been some part of me, unconscious and unarticulated until now, that took pride in her seeming invincibility.  I noted that Allistaire’s IV pole only required one pump and an occasional bag of innocent looking fluids.  Her pole was sleek and fast, unlike the weighty, encumbered poles of other kids who were heavy laden with numerous pumps, innumerable lines, and bags of a variety of weird colored liquids.  I want to believe Allistaire is okay, that she is normal.  It’s funny how nearly five months of hospital life and living with the reality of cancer can make so much seem normal and ordinary.  I have gotten used to Allistaire’s Hickman catheter tubes hanging out of her chest.  Even when we go to change her dressing each week and I see the red crusty place where the line comes directly our of her skin, it no longer fazes me.  Her bald little head with the sporadic white blond hairs is exactly the image of her I expect to see.  I cannot imagine her head covered in blond curls.  But this stuff is new, these bags and strange, mysterious drippings making their way into her.  It is overt tangible evidence that there is damage done to her inside where I cannot see with my eyes.  There is pain I cannot understand.

These are reminders that Allistaire is still in the battle against this wretched disease and the almost as wretched treatment that leaves her vulnerable and exposed to that which could end her life quicker than her cancer.  My mom gets really sad about Allistaire having a hard time.  I can only feel that we’ve had it so absurdly easy that surely it’s about time we have a taste of what life is for so many.  Mom thinks of Allistaire in light of the little two-year olds out there – outside of the hospital, that are running around and playing on a sunny day.  I see her only in contrast to the broken bodies constantly surrounding us which leads me over and over to gratitude.  Over the weekend, though, I was using the bathroom in a restaurant and encountered a mom with her little 2 1/2-year-old girl.  Seeing this wee girl with luxurious hair falling down from her head, it struck me that Allistaire’s life has taken a radical diversion from where it seems it should be.  It is a strange sensation to both experience such acclimation to our realities and yet to fight it and defy it.  Many people have commented to me in the months I’ve been here that they are surprised that I get dressed each day.  There are a fair number of moms who walk the halls in their pajamas or the same clothes day after day.  It seems that for them it is a comfort and a way to better focus their energies toward caring for their children.  For me getting dressed each day is one of the ways that I silently declare that this place and this weird world of sickness is only a part of who we are and we will not be defined by it.  It will not be our dominant identity.  It also allows me to more effectively take my place as Allistaire’s guardian, as her voice.  I interact with very intelligent professional people all day, and I want to command as much respect as I can that I might best be heard.  On the other hand, I have laid down my need for the cozy towels of home, and instead now use the hospital towels, so rough it’s like free exfoliation.

My first response to morphine and TPN and all these added things is to resist and push back.  To submit to the doctor’s recommendations feels like acknowledging my child’s strength and vitality has gaps of vulnerability like the one missing scale on the dragon’s armored body.  At some core level, I want to maintain the myth in my mind that Allistaire is not like the other kids, she simply cannot go down the road some of them are on.  She is too strong, she is too full of life, she is too loved.  But she is linked to them, because like them, she fights the same enemy.  The strongest bond is with those kids who also have AML.  I find myself irresistibly drawn to them.  There is an odd kinship.  I am simultaneously drawn to them and repelled by them.  I want to come close to them and know their story and share ours.  There is also the part of me that fears being too connected.  There is the fear that if they go down then somehow this means we too are more likely to fall.  The image of a rope team climbing came to mind recently.  It is as though Allistaire and the other kids are hooked into the same rope.  When one falls down into the crevasse, it is like Allistaire is suddenly rushing with dizzying speed to the same dark hole.  My gut oscillates back and forth between these two extremes – she is so like them that their futures are her future and she is so unlike them that she cannot possibly be taken down as they may be.

I acclimate and the bizarre becomes the norm.  I deny the reality and unconsciously find ways to defy it.  I submit to the wisdom of those who have spent years upon years studying to know the enemy because they have first studied to know the resplendent wonder of a body so unfathomably beautiful and wondrous in all its activities.  This statement in the midst of the description of Multi-Dimensional Flow Cytometry on the Hematologics website struck me:  “Normal development of hematopoietic tissues is a beautifully coordinated and choreographed genetic phenomenon that has been characterized by its cell surface antigen expression.”  Over and over, giddiness wells up in me as I learn, bit by bit, about the crazy wonder that is our flesh.  I want to yell out loud from the top of the hospital – “How great is our God?!!!!!”

I’ll make this quick on this sunny Friday afternoon.  Because Allistaire has been pretty grumpy and her eyelids are puffy, two tests were discussed to give us a better picture of what might be going on.  Dr. Fong said there is the possibility of blood pooling behind her eyes if there was a fracture.  The resident also mentioned that because she has not been eating well, she may not have sufficient proteins in her blood to hold in the fluids that she is being given which could then result in puffiness.  I made it clear that I would really rather just have a CT scan than keep wondering if a possible fracture was causing various things.  The plan was also made to add a test to her blood labs tomorrow to see how her proteins are doing.  Additionally it was noted that her hematocrit was down to 21.5 so they decided to go ahead and order blood for a transfusion.  It had not occurred to me she might be ready again for blood but was happy to realize that the blood could account for a lot of Allistaire’s grumpiness and lack of appetite.  Dr. Fong also felt that for now it might be a good idea to give her pain meds for chronic pain.  “Isn’t morphine just for World War II soldiers?”  I wondered out loud.  Not for these kids according to Dr. Fong.

Our goal was to get Allistaire nice and mellow for the CT scan rather than having to sedate her.  It was already nap time anyway and since we had also discussed the virtues of pain meds, we decided to give Benedryl/Reglan for nausea immediately prior to morphine.  It worked like a charm and Allistaire stayed nice and still for the CT pictures and in less than five minutes we left the room and went back for a nap and she could at last drink milk again since there would be no need for her to be sedated.  The doctor called a few minutes ago to say that the CT scan showed no fractures and that everything looks great.  They’ll just keep watching her and consider what the labs results show tomorrow.

Presently she is supposed to be napping but the nurse just called to say that she is wide awake (2 hours earlier than she should be) and that she had turned off the IV pump and pulled both med lines out.  That’s my Allistaire.  Looks like even the little bit of blood she’s gotten so far has started it’s work on giving her energy.  How much we take for granted.  Those little red discs so brilliantly carrying the source of life for our flesh.  What joy that blood is something we have and are able to give to her.

For now Allistaire continues to be fever free for almost the past 24 hours.  The blood cultures have been negative now for over 48 hours now which means we may be able to take her off of one of the antibiotics.  She has not thrown up nor had diarrhea either.  I’m sure her little bum is thankful for some relief!

While Allistaire was supposed to be napping I’ve been three floors up sitting by the window and had the joy of having Dr. Pollard walk by.  She joyfully told me that she has identified the Pediatric Group in Bozeman that she will recommend Allistaire be seen by and will be making some inquiries to see which specific doctor will be the best fit.  I relayed the updates on Allistaire and in regards to the possibility of a feeding tube she said that it really does have its value even if it only ends up being for a week or two.  She said that it is best to have Allistaire as nutritionally strong as possible because this will  best enable her to fight possible infection.  She encouraged me that we would not need to expect any issues with her eating/feeding herself after the tube was removed.  It was very helpful to have this perspective and assuring coming from Dr. Pollard whom I respect so much and who has seen Allistaire for the long haul.  Of course I am hoping that we’ll still be able to avoid it, but ultimately we’ll submit to the doctor’s wisdom and experience, even if it makes me cranky.

I also get to look forward to having Dr. Pollard provide myself, and any of other AML parents who want to join in, with a teaching session on AML.  I have been asking her about this for months and am excited for the opportunity to learn more.  It is all so very fascinating.  I also asked her to give me the name of the amazing pathologist responsible for her first bone marrow test after round 1.  I called and asked to speak to Dr. Michael Loken of Hematologics based here in Seattle.  While he was not in, I was able to explain my hope that Dr. Loken would be willing to meet with me so that I could thank him, see the Flow Cytometry machine and learn more about it.  The man with whom I spoke said that he was sure Dr. Loken would be elated at this request and that in case I wasn’t aware, he is somewhat of a “rock star in the field of Flow Cytometry.”  So I had heard and I’m giddy with the thought of thanking him in person and learning more about Flow.  I wish I were a poet and could write a sonnet to the invisible pathologist and his wondrous Flow Cytometry.  Perhaps a Haiku?

Things were really starting to look up.  Every once of fluid that knowingly goes into Allistaire gets counted, which means that every once that comes out does as well.  They refer to these as “I”s and “O”s in rounds.  On Monday Allistaire’s output was 1800 (unknown unit), and on Tuesday it was 600.  What joy it is to report that Allistaire’s last time throwing up was over two days ago and she has only had one poopy diaper yesterday and one today.  Who can believe it?!  Her little bunzers are really looking so much better.  Granted I used an entire tube of EPC (Extra Protective Cream) in one and a half days and I’m using some sort of fancy expensive wipes that also leave a protective barrier.  My heart was feeling lighter.

Then…one of the bone marrow doctors asked me about Allistaire’s little booster seat with tray combo that we use as her eating chair.  He and his wife are expecting and he’s on the hunt for good baby gear.  This little chair, while made of a hunk of plastic, is never the less one of the best 30 bucks I’ve ever spent.  I then channeled Vanna White and showed off all the fabulous features of the chair including the handy way it all folds up and has a convenient strap to carry it over your shoulder.  Dr. Brothers seemed duly impressed and the morning progressed nicely.  It was time for Allistaire to eat and so I began to buckle her into the chair.  In her two-year old insistence that “me do,” I allowed her to attempt the second buckle while I chatted with the nurse.  In her frustration that she couldn’t get the two ends of the buckle to line up properly, she began to angrily cry out and wave her arms in the air.  Before we knew it, Allistaire, locked into the booster seat by the one buckle, went careening forward straight onto the floor off of the big chair.  In my zeal for demonstrating the fine features of the booster seat, I had forgotten/failed to reattach it with the straps to the chair.  I swooped her up and took in the sight as I attempted to wipe away the blood.  Busted front lip from where her top teeth punctured through, bloody nose, and a few impact bruises where her nose had been snubbed upwards.  Immediately the resident doctor was called and planned to order platelets right away to help the blood clot (they expected she was a day or two away from needing them).  Fortunately in a few minutes Allistaire stopped crying and the blood stopped dripping and she actually went on to eat a few jars of baby food just a short time later.  Of course I hated seeing Allistaire hurt but to be honest I mostly hated that I was the source of her hurt.  I had failed to secure the chair and now she had an open wound with no white blood cells to combat whatever might come in to harm her.

The doctors came a bit later and examined her.  Dr.Fong kept looking up at the corner of the far wall with a flat expression.  It seems he was pondering the possibilities of her fall.  “She could have fractured her nose,” he said.  I asked what we would do about a fracture and he said that there would be nothing we could do.  I said that it seemed an unnecessary risk to have Allistaire sedated to have a CT scan just to know something we couldn’t do anything about.  Then he suggested that a fracture higher up in her nose could have punctured something-a-rather and brain juice might start leaking out.  Okay, so he actually said something about a CSF leak which I had clarified is a leaking of the cerebrospinal fluid that surrounds the brain.  All I could hear is that in my stupidity my child’s brain goo could leak out of her nose.  Suddenly the tables had turned and instead of being the mom caring for my sick child, I was the mom that had potentially severely harmed my child.  I felt wretched.  Dr. Fong felt up and down Allistaire’s nose and she indicated no pain which gave him confidence that her nose was probably intact.  They said they would keep an eye on her and we would go from there.  I was to keep a look out for clear fluid coming out of her nose.

The rest of the day was fine, other than the constant mental bashing I gave myself for being so careless.  Child dies not from cancer but from dumb mom – that’s all I could think.  By 9pm I had finally put Allistaire to bed and rushed home to complete last-minute cleaning and plant watering for our house to be put up for sale today.  By 12:15am I was back at the hospital in time for Allistaire’s vitals which she was extremely fussy about.  The nurse told me that Allistaire had felt warm but that so far she didn’t have a temperature.  By almost 1 am I finally laid down to sleep.  Then for the next five hours I awoke over and over and over.  Allistaire was crying so I would get up to check on her but she was still completely asleep.  I wandered around outside her room looking for the nurse to discuss what might be going on.  Her temperature had started to climb and so it had to be checked every 30 minutes.  Then it went down but she still cried in her sleep.  We discussed pain meds and how to deal with possible nausea and thus likely throwing up.  Then her temperature started to climb again.  Just as the benedryl/Reglan infusion was getting underway, Allistaire spiked a fever.  Blood was taken for labs so that they can see what will grow in the blood cultures.  A general antibiotic, cephapine, began its infusion.  Vitals were taken over and over and because Allistaire was so upset and fussy, I had to help with blood pressures and getting her to take the Tylenol.  She finally fell asleep in my arms as I held her in the crib.  The light was creeping in under and around the blackout blinds and the clock read 6 am.

I decided to forgo my usual routine of getting up at 6:45 to shower and thought sleep was more important.  At 8:30 I awoke to the loud metal bang of the crib rail crashing down.  Another float nurse I thought. Someone who isn’t familiar with taking care of kids on this unit.  The was confirmed moments later when I left the room to check in with the nurse before I got ready for the day.  Allistaire cried out in her room and I rushed to find her and the bed soaking wet.  The nurse was not familiar with sippy cups either and had not inserted the stopper so that milk simply dumped out.  I got Allistaire situated and back to sleep and I went upstairs to the fifth floor to shower in one of the four showers shared by all the in-patient parents.  When I returned to get Allistaire up for the morning she was receiving an infusion of the antibiotic, vancomycin.  The rest of her morning consisted of me holding her in my arms while we spent an hour and a half of me slowly giving her one bite after another of two jars of baby food.  150 calories.  The doctors rounded.  The blood cultures were negative (showing nothing growing) so far but they decided to change the second antibiotic to clindamycin because it would both fight the bacteria she had fought previously in her second chemo round and the bacteria that could be found in her mouth that could get in through her lip.  I expressed my fear that the fever was caused by bacteria from her lip which I was responsible for.  Dr. Fong reminded me that he told me a few days ago that he wouldn’t be surprised if she got a fever in the next couple of days.  I said that I wasn’t happy when he told me this originally but now I would hope to allow it to ease my conscience a bit.  At 2pm  she went down for a nap but by 4 she was already up and spiking a fever again.  She wouldn’t let the nurse give her the Tylenol so I rushed back from having lunch to assist.  We once more had her settled and this time it was the two of us laying face to face with our heads on the pillow of my pulled out bed, me rubbing her back.  An hour later her fever was down to a normal temperature and she was suddenly eager to ride the bikes.  For about 45 minutes she rode a few of the bikes around the unit, timidly at first but then with much vigor as she would push herself with great speed and then glide.  At 6:30 was bath time and so we paused to cover the end of her tubes with parafilm and cover her lines with three precisely placed pieces of Reynolds Press’n’Seal.  About midway into her bath, she became very quiet and mostly still.  Her energies must have waned.  By 7pm all she desperately wanted was to go to sleep but we had two jars of babyhood to plow through.  By 8:45 she was in bed, vitals done, meds administered, and back rubbed.  I met my friend, Cambria, who had come to visit and we enjoyed catching up while I ate an extraordinarily tasty salad with grilled salmon my friend, Katy, brought.  We topped off the evening with some ice cream and brownies that Cambria brought.  Stephen, a sweet Starbucks employee, brought over a cup with chocolate syrup and a cup with whip cream to add to our dessert.

That was tedious wasn’t it.  Probably got sick of reading the details.  I know, I got tired writing them.  But you know what?  Our hardest days have been the norm for many, many people here that I live with.  This is their constant reality.  This is there baseline.  The realm of possibilities stretch out far and wide.  We just heard a few days ago that there was another death on the unit.  This time a five-year old girl.  I learned this news while the staff rushed around caring for a Code Blue, two doors, 10 feet, from our room.  This is a battle; a wearying battle.  The points of vulnerability are abundant.  I overheard, Sonia, one of the sweet, cheerful ladies who cleans our rooms for us, telling my mom that she prays especially for the parents.  “The kids get medicine for what’s ailing them,” she said, “there is no medicine for the parents.” There are layers and layers and great depths of battle in this place.  In this building, there are housed the stories of so many beings, so many spirits.  In this place, confined by walls, constant beeping and contraptions and vials and bags and syringes of medicine, there is wrestling that does not stop.  The ventilation system in the building is a constant quiet roar that is silent until you stop to hear it’s whirring.  The tumultuous battles of the heart roar silently and relentlessly behind the IV poles, and in darkened patient rooms, in the pacing phone calls, and the constant numbers that tell of so many parts of our flesh we can’t see with our eyes.  I fight in the battle.  I pray and pray and pray.  I hear story upon story upon story.  I review the names in my mind as I walk the halls, as I shower, as I drive, as I lay down to sleep and as I wake up.  There are the faces in my mind.  Sometimes I can only do as much as conjure them up before the Lord.  I cry out and ask that He help them.  Lord, be merciful.  Father, be with them.  Most high God, look down and act.  Make your presence known.  Show yourself.  And He is and He does and it often looks like a wreck, like devastation.  The cells of my flesh press and strain against my skin, demanding that the brokenness be done, that everything would be mended and made right.

I met a woman this week who is here with her 2 1/2-year-old granddaughter.  Her granddaughter has a twin.  This woman is responsible for both of them because their mom/her daughter died this past November.  Their father is not in the picture.  This woman’s fiancé died six days after her daughter did.  She has an adult developmentally disabled daughter living with her at home for which she is also responsible.  “If it weren’t for my faith,” she said, “I’d be a wreck.”  Looks like a wreck and it is wreckage and brokenness and wretchedness – and somehow in the very midst of this the Lord is at work in her heart, sustaining her, breathing life into her.  The Lords ways cannot be reviewed every morning in rounds by numbers and measurements and tests.  But He is evidenced here none-the-less in countless stories, by so many voices.

It is 12:20am and I am worn out.  I am frustrated once agin with failing to put finite words to the infinite, tangibles to something bigger than tangible.  I met Jason and Rhonda two mornings ago.  They were upstairs having breakfast in the Family Lounge, their Bible open on the table.  Their six-day old daughter, Esther, almost didn’t make it the short couple mile drive from UW hospital where she was born to Children’s where she is being cared for.  They spoke of knowing the extraordinary closeness of the Lord; His presence in a way they had never known before this past week.  Their’s is yet another story of wreckage beautiful.

Nine outfit changes between 10am and 1am.  This not because she is Cher or some fashion deva.  No, yesterday was an explosive day.  Three bouts of throwing up and five blow out diapers.  In the first four hours of her day, I had changed her clothes four times.  I don’t even know how many times we changed the bed.  The last of these was what did me in.  Allistaire’s appetite has decreased quite a bit and I spent some time discussing her nutrition and caloric needs with the dietician.  In the last several days, Allistaire has turned into a squirrel, storing food in her cheeks rather than chewing and swallowing it down.  On Sunday she had a bite of scrambled eggs in her cheek for two hours.  Our old standby for packing on the calories, cheese, is simply being stored in bulging cheeks.  I was trying to problem solve and decided to just offer her baby food that requires no chewing.  For two hours Monday morning, I worked painstakingly with Allistaire to get nearly three small jars of baby food in which only amounted to about 200 of the 1050 calories she needs each day.  Because of rising at nearly 10 am each morning, her 3-4 hour nap in the afternoon, and the fact that each eating session is 1-2 hours, she really only eats breakfast and dinner.

So at last Allistaire was done with breakfast, she was in her fourth outfit for the day and drinking a bit of milk.  I tried to get her to drink more.  I pushed her too hard to drink more and in a moment all the work of the morning was being thrown up. The throw up was all over Allistaire and the look of terror flashed in her eyes.  She cried and shook and I began the process of cleaning up once again.  I was so frustrated and discouraged.  With the doctor’s recent threat during rounds of a feeding tube if her eating didn’t improve, repeating in my mind, I began to cry.  It had been a rough morning, reminding me of the sensation I had one time when I was trying to learn to swim out through the waves in the ocean in Newport, California.  My friend Matt told me to just dive through the wave as it came at me.  I gave it a shot and before I knew it I was taken down by the wave.  I had barely regained my footing before another wave took me down. Wave after wave I was slammed down.  I couldn’t catch my breath.  Monday morning was a similar rapid fire.  As I attempted to gather my composure before the nurse returned to the room, Allistaire looked up at me quietly and intently.  I don’t know what letters to use to produce the sound that Allistaire repeated.  But in her sweet compassionate voice, with her head cocked to the side, she looked up at me with her big blues and repeatedly asked me, “Cry?  Cry?”  “Yes, mommy cry,” I told her.  “I luss-oo mommy,” she told me over and over.  Despite feeling the weighty sense of responsibility for pushing Allistaire too far and pure frustration, Allistaire’s gentle, painfully sweet, love filled the space in my heavy heart.  Here was the one whom I had harmed and who was hurting and scared, reaching out to me with compassion and love.  Allistaire’s grace to me was so lovely and sweet and dear and a comfort.

Because Allistaire’s entire body had been repeatedly covered in various forms of “icky,” I decided an early bath was in order.  After the bath I wrapped her up in the towels and we talked back and forth with one another about the fact that she was my “baby burrito.”  I decided to go show her cuteness off to one of the nurses and I suddenly felt an immense delight at the idea of having her streek nudy back to her room.  The unit nurse manager said he’d be willing to turn a blind eye and so I unfurled Allistaire from the towels and told her to run to her room.  So from one side of the Unit to the other a two-foot somethin’ white bald girl ran with chubby bunzers and thighs jiggling all the way, tubes swaying from side to side.  She ran right through the doctors doing rounds.  Comic relief.  I needed it so bad and nobody can stay sad or upset with such a sight in view.

So it’s been a day since then and while there were quite a few more poopy blow-outs and two more throw up sessions, I think Allistaire may be on the mend.  Her bed has not been changed since 1am this morning.  She wore the same outfit all day.  While she still has some diarrhea, it is far less frequent and not nearly as immense in quantity.  She hasn’t thrown up since this morning and she is in good spirits.  It is hard to know what is causing what.  Allistaire’s blood counts are zero, she needed blood (which she finally got Monday morning), she may have mucositis down in her lower digestive tract which could account for the pain she is in which is why we’ve given her pain meds.  Of course the pain med has nausea as a possible side effect which could account for the throwing up.  Today they tested her stool sample for C.diff and the roto virus, both of which thankfully came back negative.  We’re just trying to test what can be tested and do our best to keep her comfortable and protect her from harm.  At the moment, my biggest prayer request is for Allistaire’s little bottom which is in pretty bad shape.  The skin has begun to break down despite ridiculous quantities of the thickest butt paste you can imagine and constant diaper changes.  If it continues to break down, we could expect a fever which would indicate infection and result in the need for antibiotics (which in turn may cause diarrhea).  Please pray that the diarrhea would continue to diminish and give her skin a chance to heal.

In the midst of this, Allistaire’s has been in good spirits.  Well, at least since she got blood she’s been much happier.  Her energy certainly has been less as is evidenced in her disinterest in riding the bikes much, but she still enjoys walking around the unit and occasionally pushing her friend Caden in the car stroller he loves to ride in.  We’re holding up.  I miss Sten and Solveig but took joy this morning when I got to talk with Solveig for a few minutes and she told me about exploring in the woods and the joy in her voice about the birds she had spied.

I’m not proud to say it but every time I hear the word “nadir,” pronounced “nay-der,” I just can’t take it seriously and it feels like it should be followed by “dude.”  Anyway, on to the point.  I only recently learned of this fantastic word which is surprising given it’s presence in our life on three other occasions.  Upon looking up the definition, I learned some pretty interesting facts.  It comes from the Arabic, “nazir,” which means “opposite.”  Apparently it can be used figuratively to mean the lowest point of a person’s spirits and it can also be used to refer to the lowest point reached by a celestial body during its apparent orbit around a given point of observation.  In our life, it is the final explanation provided by Wikipedia that is meaningful today.  “In western medicine, the term nadir is used to represent the lowest level of a red blood cell count while a patient is undergoing chemotherapy.  A diagnosis of neutropenic nadir post chemotherapy typically lasts 7-10 days.”

So yeah, all of that to say, we’ve hit bottom today at last.  On this, the 14th days since Allistaire began her fourth round of chemo, her Absolute Neurtrophil Count, ANC, hit zero.  I was so elated this morning to hear the good news that she had finally reached bottom.  You  can’t go up until you’re all the way down. They didn’t even start doing CBCs, (Complete Blood Counts), until day 7 and then her ANC was around 1,200.  The following days it was 1,500, 12,00, 550, 175, and 10.  Now we wait to hang out at zero.  Another dad, whose daughter is here with a relapse with AML, said that when she went through this round, her ANC was zero for about 25 days.  I asked the doctor about this and he said that it will probably take longer than Allistaire’s previous round and might be more along the lines of the first round.  In response I told him that in the first round, Allistaire’s ANC stayed at zero for 18 days.  He said that that was probably a bit on the long side too.  So, not sure what to think but I would guess definitely over a week and possibly closer to two weeks.  Of course once it starts to come up it will take at least a week I would guess.

Please be praying for protection for Allistaire’s wee sweet and vulnerable body.  She literally has almost no white cells in her whole body which means she has no defense against marauding invaders.  Today she was pretty tired and grumpy a fair amount.  She is much more reluctant to eat.  She is also drinking less which tonight necessitated she be hooked up to her IV while she sleeps to get fluids in.  Her little bottom is already getting a bit pink and she had some impressive diarrhea tonight as well, (much akin to the last time though so far not as frequent.)  She is also quite close to needing blood as well which could be another significant factor impacting her fussy spirit.  Her hematocrit, (red blood cell count), today was about 22 and they will transfuse at 20.

Another bummer part of her day today was her need to get her next dose of Synagis.  Synagis is the brand name for Palivizumab, which is used to prevent RSV, a respiratory virus.  Because Allistaire’s little leg muscles are so small, she actually had to have two shots of it, one in each leg.  I held Allistaire with her back against my chest, she sitting in her crib, and another nurse holding her feet.  Two other nurses simultaneously administered the shots into her thighs.  We opted for shots so that she would need to be hooked up to her IV for an infusion of the drug.  Every time they access her lines, there is the added risk of infection, so we all work hard to minimize the number of times they are accessed – thus the choice to give shots instead.  Needless to say, Allistaire was extremely upset by the whole thing including being restrained and then having “stickies,” (bandaids), on her legs.  The big shocker for me was how much this drug costs.  I knew it was expensive because our good friends at Regence Blue Shield decided not to cover it, but I had no idea just how expensive.  The cost for these two shots this morning totalled $14,000.  Crazy!!!!  She gets this every 30 days during flu season, which apparently here has really only just begun.  Oh, I should add, lest you faint at the thought of us having to pay for it – Allistaire is covered under Medicaid as her secondary insurance through the state of Washington.  This means anything that Regence doesn’t pay, Medicaid does.  Again a huge blessing!  Because Allistaire was in-patient for 30+ days, she automatically qualified for a Long Term Care program based on her income level.  My favorite part of the application was where they asked if Allistaire was “running from the law.”

The year after Sten and I were married, Sten had the opportunity to complete his masters degree in accounting at Montana State University in Bozeman.  This meant that I would live in the land of his youth, the land that is woven into his being.  For two years I soaked in Montana but we always knew it was a temporary home and that we would move because of the experience in public accounting Sten wanted to gain that would necessitate living somewhere like Portland or Seattle.  Some years later, however, I realized that my husbands spirit would be overjoyed to live in Montana again.  I sneered in my heart as I said, “I’m never moving to Montana unless God changes my heart.”  I was pretty sure God wouldn’t change my heart because I had no intention of leaving my homeland of Washington.  In our banter, I have always claimed Washington as more beautiful.  Then one day my friend, Sam, sent an email with the power point entitled, “Shift Happens.”  It’s primarily lots of amazing statistics about how fast and dramatically the world is changing.  For example, one weeks worth of the New York Times contains more information than a person in the 18th century would have been exposed to in a lifetime.  As I contemplated these staggering changes, I wondered how in the world I could help prepare my children for a future I can hardly imagine.  I realized quickly that there is no way that I can prepare them for very many of the specific challenges ahead, but perhaps I might do my best to support the formation of their little spirits and their character.  I had always reviled the idea of “sheltering” my children but came to conclude that there might be abundant worth in providing a unique time and space in which the core of my children’s little beings had a chance to thrive and grown and gain strength and resiliency.

Ever since the character Anne, in Anne of Green Gables, became entwined with my own self as a child, I have been a firm believer in the incalculable value of the imagination; of creativity.  I am entranced by the miracle of being able to use your eyes to see black shapes on a page and transform them into other magical and fantastic worlds or the life of someone else from another time and place, of taking a stick and standing on a big rock and how the mind can enter a reality not confined by the finite that are the tools of imagination.  I remember vividly lying down on the moist mossy floor of the forest and looking up at the sunlight filtering through the tangle of ferns that were the roof of my newly constructed home.  I remember how the ditch that ran with rain water in front of our house was ever the land the Star Wars guys loved the best, where they explored the raging river.  My mind is no longer able to not see the world in this light.  Every hike, every foray into the woods, reveals yet again a magical world of possibility.  As I contemplated what I hoped for my own children’s childhoods I wondered how to determine the value the stars have had on my soul.  I wondered how seeing that the night sky has depth, and seeing the most infinite finite thing I know of – seeing mountains day after day, what does this do to your being?  Memory after memory rose up in my mind and in no intentional or orderly way I came to realize that if I had the opportunity to give my own children such an opportunity to race through the woods day after day, that I would.  I thought about the kids who get off the bus in front of our house, whose faces are lowered down, glued to their cell phones and iPods.  I thought about video games and so very many things that only enhance our natural impatience.  I remember talking with the man at the needlepoint store and how he told me there are very few young people that come in any more  – that it is a dying art.  I thought of the many forms of art that are being lost because we are so attuned to demanding the instant, the immediate.  As a culture we are moving in a direction that is less and less willing to produce something that takes tremendous time and effort.  Everything is disposable, expendable.  And I wonder, has this not already found its way into our relationships with one another?  Haven’t we become ever so much less willing to endure with one another, to patiently love one another?  Are we not tempted to view the very people in our lives as expendable.  Ultimately, what does this do to my view of God, of a God whose view is as broad as all of time and whose plan for the world is on such a scale.  All these questions and more began to rise up.    I do not recall the exact order or timing, but at some point in this process I was taken aback to discover that God had changed my heart about Montana.

But why Montana?  Why not here in Washington?  Why not some other place all together?  When Sten and I lived in Montana, we lived in Family Graduate Housing.  The best thing about FGH was not the $280 rent per month, nor the lilacs planted on either side of the front door, nor the view of the Bridger Mountains from the kitchen window, though all were wonderful.  No, the very best thing, a reality I will always cherish, was the fact that Peder and Jess, (Sten’s older brother and our sister-in-law), lived just down the road around the corner; 60 seconds away if you ran.  To be that close to family who are also beloved friends, was incredible.  It provided ample opportunity for the hard and the wonderful.  My relationship with Jess grew immensely that year, because we saw each other very regularly.  This relationship is one of the single most cherished things in my life and it has been able to preserver in large part because of those significant years.  At the same time we were only about 15 minutes from Sten’s parents.  Again, it was joy and privilege to gain two more parents, two people who have walked the road of life ahead of us and who love us and are utterly committed to our well-being.  In Montana are two treasures bound together: close proximity to both wilderness and family; both are readily accessible and thus more likely to be incorporated as a daily part of life.  God had turned my heart toward Montana, and from that point on, as the years passed and we visited each October, January and July, my prayers and longing before God increased as I asked over and over if He would provide a way for Montana to be our home.  Since those early years of yearning, the tug has only strengthened as Sten’s younger brother Jens married Jo and they too made their home in Bozeman.  In just the past year, we have had the joy of having the last hole in our family filled with Bjorn’s wife, Jessica.  They also live in Bozeman.

I know that Montana and Bozeman are no guarantee of the sort of people Solveig and Allistaire will turn out to be, but as a parent I want to continue to seek to provide for them the best I can.  As I wrote last year, I had to lay Montana down before God, acknowledge that I had idolized it and submit it and my future and the future of my children to the Lord who is the only one able to craft them into the sort of beautiful glorious women folk He is calling them to be.  I had to lay down Montana as my hope for rest and look up into the eyes of God and know that He is the only source of true rest and that His rest can carry me wherever I dwell in the world.

As I look back over the years and how God has used Montana to work in my heart and to reveal significant truths to me, I see how He even used Montana to prepare me for these very days I live now.  I longed for a place to be hope for myself and hope for my children and came to discover that the land of promise is dwelling with Christ.  Slowly, slowly, in a most tender and gracious way, God brought me to December 1st when it seemed the very ground beneath me was slipping away as the reality that faced Allistaire began to grow clear.  I believe that though I found myself falling down into blackness and terror, God had already been creating the grip that would hold me.  He had already begun the work of forging a new path in my heart, a path that is the very Lord Himself that was allowing me to see that God is able to accomplish His will even in the face of seemingly overwhelming circumstance and because of this I can rest.  He is able.  Slowly the Lord has claimed, bit by bit, the territory of my heart.  He is able to form the hearts of my children, of myself, of my husband.  He is able to bring us to Montana or do something else all together.  He is able to heal Allistaire.  He is able to hold me fast even if my darkest fears come true.

The night before I took Allistaire to the pediatrician and first heard the word Leukemia linked to Allistaire, Sten was offered a job in Bozeman, Montana; a job that combined the skills and experience he has worked so hard to gain over the years and the heart he has for the land, for wilderness and the beauty of the earth.  For years, Sten has scanned the Bozeman Daily Chronicle for job opportunities.  A few years ago he discovered Beartooth Capital, an investment company based in Bozeman which restores distressed ranch lands.  At that time he submitted a resume, despite knowing he could not apply for the part-time position they had open.  This past October, as I literally walked in the door from driving back from a visit in Bozeman with Solveig and Allistaire, Sten handed me a job description for a position at Beartooth.  The gleam of joy sparkled in his eyes, and if you know Sten, you know that’s like jumping up and down excited for him.  He applied for the job and received an email some weeks later saying that they had had an overwhelming response and requested that he complete an additional questionnaire to aid their attempt to narrow down a candidate.  Another chunk of time passed and one evening a security guard hit Sten as he was driving downtown on his way home from work.  The amount we would get to fix the car was more than the car was worth but we weren’t quite ready to buy a new car so Sten’s parents generously loaned us their Subaru.  Sten flew to Bozeman late on a Thursday night in early November and had called Beartooth to let them know he was going to be in town in case they’d like to meet with him.  They agreed to meet with him but made it clear that this was not an official interview.  He met with Beartooth on a Friday, drove home on Sunday and by the end of the following week had 3 phone interviews.  Then he flew to Bozeman for a day-long interview where he met all the members of the firm and had a great chance to really see what they do.  Each part of this process only grew Sten’s excitement for the job and the opportunity to return to his homeland of Montana.

As I drove home that Thursday morning, December 1, 2011, I strove to contain my flood of tears and I called to tell Sten he should let Beartooth know they would need to hold off in contacting his supervisor at his current job.  In the days that followed we eventually learned what was really going on for Allistaire and what possibilities lay ahead.  On the afternoon of December 9th, we were told they had found cancer cells in Allistaire’s bone marrow.   Only a week or so before, we had been on the cusp of having everything we had hoped for, and now it felt like it had all been swept away in a flash.  Sten called Beartooth and told them that sadly, he could not accept the job, but that if they could hold it for six months, he might be able to take it.  In the weeks that followed our whole focus was on the frightening new world of cancer and the hope that Allistaire’s life would be spared.  The folks at Sten’s firm, Freestone Capital Management, were incredible in their swift willingness and generosity to help.  They found numerous tangible ways to support us for which we are so very thankful.  A parking spot in Sten’s building so he could go back and forth from the hospital easily, money, food, flexibility and a place to stay at night were some of the amazing ways that they showed us tremendous love.

We had not forgotten about Beartooth and Montana but tried to only let it linger at the far edges of our consciousness.  When you are fearing for your child’s life, you feel miserable about being sad you can’t take a sweet job or live in a beautiful place.  Then it came to pass on January 17th, the evening before the results of Allistaire’s first bone marrow test since she’d begun her treatment, Beartooth contacted Sten and said that they’d still really like for him to do the job and that they were open to being creative in finding a way to make things work for both parties.  We were joyously surprised by this turn of events and cautious about our unknown future.  We knew we had to stay here at Seattle Children’s for Allistaire’s treatment, the question was, how long would this be and what was reasonable.  The very next day we got the news that Allistaire’s bone marrow was looking healthy and beautiful and there was no detectable evidence of cancer.  We decided that if we had one more 0% bone marrow result we could take the risk to move to Montana and away from Seattle Children’s.  We essentially decided that one more good test would give us hope that Allistaire would not need a bone marrow transplant and that if her cancer someday came back and she needed a transplant, we would deal with that reality when it came.

I have mentioned  before how risk averse I am and thus these were exceptionally weighty decisions.  How do you weigh the pros and cons when you have to take in consideration so many unknowns of the future?  Again, I can see how God has been at work in my heart to prepare me for these days.  Over the previous year I went through a lengthy and challenging process of examining some of the key choices I made in the past that have had significant impact on my present realities.  I grappled with how my choices work with God’s sovereignty.  I grappled with the way hindsight can call into question the wisdom of choices.  I am not and have never been without sin and I wondered how my own sin and my simple finiteness impacted my decisions.  It was a really hard year in many respects but it was a year that eventually brought peace and rest because I came to see and believe that somehow, in the tangled story of my life, God is at work accomplishing His will and continuing His work of creation and redemption.  I can’t tell you how it is that God’s perfect will, my brokenness and the brokenness of the world and my faith all work together.  I still don’t know.  All I can say is that I feel content to keep seeking the Lord, as I have done in varying degrees in the past, and entrust the outcome and my future days to Him.  It is all that I can do and He has shown Himself good over and over so I stake my hope in that.

On February 27th we received joyous news that Allistaire’s 2nd bone marrow test since treatment began, came back 0% with the Flow Cytometry test.  Sten contacted Beartooth to relay the good news and to discuss the next steps.  Once the logistics were worked out, it was determined that Sten could start with Beartooth as late as April 16th which was precisely what we had requested in order to have Solveig and Sten be able to be home with us in Kent during our out-patient time of Round 3.  Those four weeks were a wonderful time at home and full of lots of work getting the house ready to be put up on the market.  I spent five afternoons alone pressure washing the front and back patio and driveway.  We packed boxes and I cleaned blinds and windowsills and we painted and replaced the kitchen sink faucet, etc.  The most amusing item on our to-do list was to buy 1 or 2 cars.  We were down to one car with 190,000 miles.  One Sunday evening, while Sten was home working busily on contract work for Beartooth, I loaded Solveig and Allistaire up in the car, planning to cruise the used-car lots of Burien.  I know  – classy.  Since Allistaire’s ANC was low and she couldn’t be exposed to the public, I simply drove into a car lot, motioned to speak to someone and asked if they had a 2007 or newer Suburban.  On the fourth try, at Burien Chevrolet, we happened upon a 2008 Suburban with 49,000 miles.  By the next evening the deal was done and we could cross that item off the list.  Finally everything was done and just in time to start Allistaire’s fourth and final round of chemo.

So here we are at the end of many things.  The days preceding coming back to the hospital were hard days for me.  We had our very last day together in our house and together as a family for a long time.  Sten and I went to sleep and woke up in our room together at our house for the last time.  Tomorrow is Sten’s last day of work at Freestone and on Friday, he and Solveig drive I-90 the 690 miles to Bozeman.  Sten starts his new job at Beartooth next Monday, 4/16.  For the next several months Sten and Solveig will be living with Sten’s parents until the Meadow House, the house we get to live in, is empty of renters.  Allistaire is likely to be done mid-May with everything.  We’re not sure whether or not she and I will go directly to Bozeman or stick around here in Seattle for a while.  I imagine this will be largely determined with how our home sale is going.

Thanks for your patience as I relayed such a lengthy and detailed story.  But it is the way in which the story has been long and entwined with other elements in our life and the details that really show the Lord at work.  This is not the way I imagined I would hopefully one day move to Montana.  These are not the circumstances I would have ever chosen.  This is the Lords story and it is not done, but this is where we are in the narrative.  I’m excited to move but I can hardly ponder the reality of it.  There is still so much that must take place in the next few months.  But I do look forward to a warm August day when I can sit on the steps of the deck at Meadow House and look out over the hills, down to the Gallatin Valley and yonder to the Spanish Peaks and have time to take it all in.

Life.  Beautiful, joyous life.  Another day to celebrate and give thanks for the Father raising Jesus Christ from the dead, forever conquering sin and death.  Life that overcomes.  Today we are thankful for vigorous delightful life that shows up in sisters dancing, cherry trees blooming and silly girly cousins in easter dresses.

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Sten and Solveig and I get to be home together tonight and tomorrow because my dad is staying with Allistaire.

Tomorrow night at 7- 7:30pm Allistaire will get her last dose of Blue Thunder, her last of chemo for her treatment of AML.  It is absolutely surreal that we are at this point.  Granted, we still have about 3 weeks left in the hospital and at least a month before she’ll get her line taken out, but here we are at the last dose.  I have struggled this week back, not so much because I have to live a bizarre altered life in a hospital, but because I am surrounded by constant reminders that what I want to be the end may be and it may not be as it has not been for many of the faces around me.  There is Pedro’s son, that though he has completed his cancer treatment, remains in the hospital because now his liver is in trouble from the chemo.  Or Connie’s daughter who has is almost 8 years old and has had two bone marrow transplants, has spent over one entire year in the hospital since her last transplant and now spends 4 hours 4 times a week on dialysis because she needs a kidney transplant – also due to the treatment she’s received for her cancer.  There are numerous stories of relapse that continue to confront me.  I have felt battered this week and I want to feel joy for this amazing milestone in Allistaire’s life and in all of our lives.  I have struggled with guilt for having less joy than I feel I should have.

The Lord, however, has sent me encouragement this week, one in the form of the mother of the 6-year-old AML girl who is in for a transplant because of relapsing.  When first I met the mom several days ago, she almost immediately said that these children are the Lord’s, they are in His hands.  That was the very first time I have heard words like that from anywhere inside this world of the SCCA Unit, coming from this mom of all moms.  It was humbling to hear from her and it was powerful.  This morning a dear friend of mine sent me a text including the passage of scripture where Jesus tells Peter that Satan has asked for him, that he may sift him as wheat, but that Jesus has prayed for Peter that his faith would not fail.  My friend used this passage of scripture to remind me that Christ Himself is interceding on my behalf, that my faith would not fail.  I am again humbled and awed that such a thing is true.  That Christ Himself yearns for my faith to stand strong is such an encouragement.

We are not yet done with this AML.  In a few months we will merely need monthly blood tests, but the possibility for it to come back or another cancer to rise up will be ever with us.  Yet, slowly, slowly, the Lord is aiding me in releasing the tension in my hands, helping the palms to open and to rest.  I want to savor what has transpired.  I want to steap in the visions of a new life the Lord is opening up before me.  I want to know what it is to walk more and more with the Lord.  To walk is a slow mode of progression.  What grace it is from the Lord that this is what He has called me to.  He does not expect that I arrive.  He invites me to walk.

For all of you who look to the Lord for your hope and who have prayed on our behalf, I ask that if you are willing and able, would you stop what you’re doing tomorrow evening from 7 – 7:30pm Pacific Standard Time and pray for our little beloved Allistaire and ask that if it pleases God, He would use this last dose of chemo to complete the destruction of every last cancer cell in her wee precious body.