I failed to share with you the great news about little Caden, who’s battling Neuroblastoma.  I relayed the fact that he received experimental MIBG radiation in San Fransisco and was waiting for scans the week after Thanksgiving to see how well he responded to the treatment.  The joyous news is that it worked really well and resulted in a significant reduction of the neuroblastoma cells.  Apparently they give a score that indicates prevalence of the disease.  I don’t know what the scale is but he started at 26 and after about 5 months of chemo he was down to a score of 20, which concerned the doctors that the cancer was not yet enough under control for Caden to undergo a stem cell transplant, which is a key component of his treatment.  Thus he underwent the MIBG radiation.  The most recent scans at the end of November showed that while the cancer is still there, it is down to a score of 4.  For Caden to move forward with transplant he needed a score of 5 or less, so they were ecstatic to be able to move forward with his transplant.

The transplant was scheduled for the 19th of December, but as of last night it is on hold.  In a moment, everything has changed.  Caden is fighting a cold which to most of us would be nothing, but to a body with an already compromised immune system and heading into a week of of “conditioning” in which Caden would be getting radiation and chemo that would annihilate what’s left of his immune system, this wee cold, could literally be the death of him.  Apparently, this particular cold virus is also hard to get rid of.  Every day that transplant is delayed is a day without an assault on the neuroblastoma, an unguarded day.  Friends, my heart is just so heavy for my friends Pam and Jason.  It feels feeble to ask for prayer on their behalf because of how insufficient it feels – there is nothing visibly accomplished.  But I cannot call into question the how of prayer works every time – I am told to pray, in all things, with thanksgiving.  Thank you Father for how far you have brought Caden and his family.  Thank you for all the ways you have protected him thus far and we ask that you would swiftly bring about the end of this cold.  You know this virus, you see it, in all it’s detail, you know it utterly and you are able to destroy.  That is what I ask for – I ask for more mercy, more grace, more demonstrations of your power to overcome death and for comfort by your Spirit for Pam and Jason.

I am going to copy in Jason’s update from late last night, actually from the wee hours of this morning:

Thursday December 13, 2012                Day 262

I really don’t even know where to start this evening………………….

Our morning started out as usual with Caden being a crazy kid chasing his sister up and down the camper.  He made sure to jump on my bed a few extra times just to make sure I was awake.  Breakfast for Caden was a little weak and he ultimately ended up only eating about half of his waffle…….

At 9:30 we packed up and headed over to the SCCA for our days worth of appointments.  We started off with a quick meeting with the nutritionist and then at 11am we met with the financial services department.  It was really good to hear her say how good she thought our insurance was.  She said it was the best she had seen for our carrier which I thought was interesting…..We went back upstairs to the transplant unit and had our third meeting of the morning with the child life specialist.  Once we completed that meeting we were on our way to lunch.

For lunch we decided to take a quick walk up the street to the REI store.  They actually have a World Wraps on the second floor and that is what sounded good for lunch……. In our continual efforts to keep Caden healthy, even though we know he has a cold, we decided to get the food to go and headed back to our car in the parking garage of SCCA to eat……..   Once we were done eating we still had some time left so we decided to stay in the car and just let the kids goof off in the back.  At one point Caden decided to come sit up front and pretend that he was driving.  While he was sitting in my lap I noticed that he felt a little warmer than normal so I asked Pam to hand me up the thermometer and that is when the day started to spin out of control…………..

When I checked it was in the high 38’s which meant he had a fever and that we needed to get moving.  It was about time for our appointment so we went back upstairs and eventually got put into our room for our scheduled meeting with our transplant doctor.  When she came in I asked her if we could check Cadens temp and sure enough it was climbing…… We monitored him for a bit while we went over some of the paperwork for transplant and then once everything was ready they escorted us down to the infusion center where Caden got a bunch of IV fluids and started on his first set of antibiotics……….Before long they were talking about an ambulance and him getting a ride back to Children’s……I tried to reason with them that it seemed a little overkill to do an ambulance for this but they insisted so we complied………………I was over it at that point and figured it was really not worth fighting for, at least it was not and ALS Lifeflight from Montana……..Then the ambo crew showed up……….An ALS rig with a Critical Care Nurse on board……….Seriously? Whatever? Once again I figured it was not worth arguing about………….About 10 minutes later the Critical Care Nurse asked the floor nurse the same questions that I was asking because he was clearly confused why Caden needed an ambo as well.   Apparently all you need to say to make problems go away is “The doctor ordered it” because that is what he was told and off we went……..

The worst part of the day was the news we received while sitting in the infusion room getting his antibiotics.  Cadens cold is a virus called Parainfluenza.  If you recall last night i mentioned that there were only a few colds that they would not proceed ahead with transplant if he had them. Well, go figure, this is one of them.  Thankfully they found it because if he were to go to transplant with it it can often times be fatal…………..

Now for the worst part of the day.  The Paraflu is one that is particularly hard to get rid of and usually takes some time……something that we do not have much of these days……..There is one treatment that they usually do that takes 5 days  or so called Ribavirin.  The Ribavirin treatment is significant and involves a plastic tent over his bed, the rest of the room covered with sheets, nurses in powered respirators, me wearing a mask, etc, etc, etc…….Pam and Camryn will be excluded from the room for the 5 days as well.   The treatment basically impacts the DNA of the virus thus making it go away……….That is one option.

Option two is a new, non FDA approved treatment that Caden is a candidate for.  We have not heard much about this one but will first thing in the morning……..hopefully it is a little less involved than the first one………..At this point we are willing to consider anything that will work because if the virus does not go away we do not go to transplant….If we do not go to transplant then…..you get the point……

This evening once we got to our room at Childrens we eventually were taken down to get a CT scan of his chest.  The scan showed basically the same things that his X-ray yesterday did. Some inflammation around his bronchial tubes consistent with the Paraflu but not severe enough that we would start the treatments tonight….so, once again, hurry up and wait a little bit longer……….

So without a doubt at this point Cadens transplant is delayed………we don’t know how long even yet…………..What I do know is that we cant do transplant while this shit is in his system……….We cant wait too long as the cancer if left unchecked will eventually come back…..we have not had any treatment for almost 9 weeks now……….I don’t know if another MIBG treatment is in order or not but I surely intend to ask in the morning…………

A simple cough, sneeze, brush against a piece of clothing, or a virus floating in the air is what caused this. We will never know where the one that infected Caden came from but I can surely tell you that it will always be on my mind………… Many we have talked to over the past couple of weeks have tended to downplay a cold and clearly have no clue how serious even a minor cold can be…… I have been made the bad guy more than once over the past several weeks for not wanting to be around kids that were sick a week or two prior or to be around large crowds where anything can be lurking……a simple sniff to most can be ignored and is usually no big deal. A single cough for most can be ignored as well. Hell, for most people this virus is nothing more than the common cold………  In our world those things can mean the difference between life and death.  Unfortunately at this point we are dancing between those lines and finding out exactly what that means………… Every wince, every whine, every non normal noise Caden makes, makes me think up a hundred different reasons why he is making that particular sound. Most are not good.

It is strange sitting here once again next to Cadens bed writing the nightly update.  I knew that I would be back here eventually but really thought it would be next week and we would be beginning transplant.   At this point I just hope we get there……..

I honestly don’t know what else to say at this point. It is midnight, Caden is resting in bed right now but keeps waking up because he is having bad dreams. I don’t know if it is just one of those nights or if it is because we are back in this place, the sights, the sounds, the smells all too familiar and making it hard to sleep???…….Again, a million reasons why go fleeting through my head………….Pam summed it up earlier today when she said that no matter what we do we cant seem to get any steam heading forward……….every time we think we are making some progress we get shut down…………….In a lot of ways I feel like we are back at March 30th……what it does do is remind me to always seize the day. No matter what, make the most of every second of every day. Whether you decide to use those 24 hours on, family or something else it doesn’t really matter, just make sure you make the most of every single minute…….

FC……………………………………….

One year ago, on a beautiful winter Friday afternoon, December 9th, 2011, I saw the phone number for Seattle Children’s announce itself on my cell phone.  It was Dr. Tarlock saying that they had found cancer cells in Allistaire’s bone marrow.  They didn’t know yet what type of cancer it was, but we needed to get on the road to the hospital to admit her.  Only a week before she had gone to Children’s for the first time ever, in desperate need of blood transfusions.  On that day, December 1st, she had a hematocrit of 9 – only 25% of her red blood.  I later asked the doctor how long she would have lived with such a low hematocrit.  She calmly told me, “2-3 days.”  I will never, ever forget that moment.  The flood of terror that death had been so very narrowly escaped and the awe that I lived in a place in the world where I could get help for my child; immediate, excellent help to keep her alive.  Had I been living in another part of the world, I would simply have a dead child.

It has been one year – one leap year – since that day finding that monstrous word, “cancer,” dwelling intimately in our midst.  Prior to that, cancer was a word off to the side, far in the distance, relegated to the old and to the lives of those who seemed unreal, simply characters in a story rather than real, flesh and blood, moms and brothers, fathers and aunts.  Suddenly it came at us with rushing speed, like standing in front of a semi-truck barreling down the road straight toward you – and you stand, unable to move from the place where your feet are planted.  It is coming for you and there is nothing you can do, you are about to be taken down.

Today I am sitting in the Co-op in Bozeman.  Outside there is a terrific snow storm, causing giddiness to rise up collectively in the spirits of we Montanans.  I had to put the Suburban into four wheel drive to come into town.  I dropped Solveig off to make “Winter Wonderland” crafts at the Cancer Support Community of Montana.  They’re making decorations for the Cancer Care Unit at the hospital. These might seem like unremarkable activities and yet as I set these realities against the backdrop of the realities from one year ago – I am in awe – I am still in a bit of shock that this is my life – because it could have been so very different.  God took us down a path I could have never willfully chosen, a path i could never on my own desire.  A year ago, I felt my world cracking and breaking apart around me.  Sten had been offered a job in Bozeman on November 30th, the night before I first took Allistaire to the doctor.  The same night we had met with our real estate agent about short-selling our house.  In less than 24 hours, it felt as though everything had changed – we were on the cusp of walking down the road to such long hoped for goals and in a flash, seemingly insurmountable barriers rose up around us like looming dark walls.

I know I am redundant.  How many times have I recounted these details?  I cannot stop myself – this is part of my Exodus story.  The escape from the Egyptians, through looming walls of water of the Red Sea parted, is engrained in the Israelites.  It was the story the Lord commanded them to remember over and over and over.  Why?  Because it is the story of God’s deliverance, of His releasing them from bondage and into the provision and abundance of the promised land.  This is the story God recreates in a thousand, five million variations, over and over – it is the God that He is – a God who allows His finite creatures to be bound, that He might deliver.  Is He cruel?  He does it to demonstrate His love, His mercy, His grace, His power, His might, His glory.  Why?  Because He is arrogant and a showoff?  Oh, because He so unfathomably loves us and wants us to see Him, to see Him that we might have life!  Life!  He wants to bring us into the promised land – into Himself.

The thing is I am not done needing to be delivered, that’s why I recall this exodus in my life and why I recall the other stories of exodus that have also taken place in years long ago in my life.  In my email inbox the other day was yet another email from Anthropologie about a great sale.  I took a few minutes to peruse the offerings, all the while knowing we really didn’t have the money for me to be buying gorgeous clothes.  Two sweaters ended up in my cart.  I can’t wait and think this through, I told myself.  Sale items go quick.  If you want the good deal you’ve got to pounce.  With soaring speed, I pushed the “Order Now” button and it was done and I felt a rock in my stomach.  What was I thinking?  We have SO many other things we need to be spending our money on – tires for the car, getting the dog neutered, Christmas gifts, a trip to Seattle, paying the credit card – on and on the list goes.  The battle was on in my heart and mind.  Oh how beautiful these two sweaters are and such a great price, nearly half off.  Verses from the past week’s Bible Study Fellowship lesson rose up in my mind.  How I tried to push them back and convince myself it was okay.  There was a pair of pants in the closet I could return that I had not yet worn.  I was strategizing my sin.

“Do not store up for yourselves treasures on earth, where moths and vermin destroy, and where thieves break in and steal. But store up for yourselves treasures in heaven, where moths and vermin do not destroy, and where thieves do not break in and steal. For where your treasure is, there your heart will be also.”  Matthew 6:19-21

The doozy passage for me was James 4:1-10  “What causes fights and quarrels among you?  Don’t they come from your desires that battle within you?  You desire but do not have, so you kill.  You covet but you cannot get what you want, so you quarrel and fight.  You do not have because you do not ask God.  When you ask, you do not receive, because you ask with wrong motives, that you may spend what you get on your pleasures.  You adulterous people, don’t you know that friendship with the world means enmity against God?  Therefore, anyone who chooses to be a friend of the world becomes an enemy of God.  Or do you think Scripture says without reason that the spirit He  caused to live in us envies intensely?  But He give us more grace.  That is why Scriptures says:  “God opposes the proud but gives grace to the humble.”  Submit yourselves, then, to God.  Resist the devil and he will flee from you.  Come near to God and He will come near to you.  Wash your hands, you sinners, and purify your hears, you double-minded.  Grieve, mourn and wail.  Change your laughter to mourning and your joy to gloom.  Humble yourselves before the Lord, and He will lift you up.”

This is me.  I am the double-minded.  I am the adulterer that claims One love but goes off with another.  This is one of the cancers inside me – the constant battle to satisfy my immediate desires that thwart my greater and more eternal desires.  It eats at me and gnaws and I give in and hand myself over to it, so many times.  It looks so innocent, even lovely, even beautiful in colors of blue and silver – two little sweaters – where is the harm?  Sometimes I have victory but I often know defeat.  There are walls of my sin looming around me.  I am surrounded by them.  They feel insurmountable and they are a battle that has already lasted far longer than a year.  I am in need of deliverance.  “But He [God] give us MORE GRACE!”  I am mourning and I submit myself to the Lord.  The Lord has overcome much in my life.  I look back.  I look back over days gone that I might have eyes to see the day ahead.  I need Him to overcome my sin, to search it out, just like insidious cancer cells hiding out in my flesh.  I need Him to come into me with His Spirit and undo the death that dwells so metastasized in me.

The next morning I called the Anthropologie customer service number to try and cancel the order.  It had already been processed and was shipped.  The battle waged on in my heart as my courageous attempt to drive a stake into the heart of my choice fell flat.  The sweaters were on their way.  How would I resist them?  Perhaps I would just try them on and hope that they didn’t fit or I didn’t like them.  Another day passed.  Verses came into my mind again and again.  The word of the Lord calling to me.  Harkening to me. Entreating me to come toward Him.  To release my grip on the pleasures that would bring me fleeting joy and leave me feeling ugly and defeated in short time.  I left a hurried message on Sten’s voice mail the next day.  Don’t let me open that package.  If I see them I don’t know that I can reject them.  Pathetic.  I know.  I feel the shame of my sad struggle.  How can something so small entice me so powerfully.  But beauty does this to me and I convince myself that beauty is not wrong, that my love and yearning for beauty is something that God created in me.  It is evidence of His beauty.  And these are truths.  Beauty is not wrong.  But I grab hold of the bit of beauty and reject the greater beauty and that is ugliness.

I had no intention to write about this struggle in my life, but here it is.  I celebrate this day as I look back one year ago and see how far the Lord has brought us – I walked through the valley of the shadow of death and have come out into a beautiful expanse, toppled walls behind me.  I celebrate what my Father has done and ask that He would continue to show us, to show me, more grace.  I ask for more toppled walls.  The Anthropologie package is supposed to be delivered today.  Wars are won a battle at a time.  War is gritty and unlovely and rarely glamourous.  I wonder how often the foot soldier felt nobel when no music played as he put one foot in front of the other trying to take ground.

I have no photos to show you of victories won in my heart.  But I leave you with pictures of life – tangible evidence of God’s grace extended.  I also have a few more numbers for you:  3,200 ANC, 6.4 white blood cells, 245 platelets and 40 hematocrit.  These were Allistaire’s blood counts on November 30th, 2012 – one year to the day from her first blood test.  Thank you GOD!  Our next appointment is on Christmas Eve morning, 12/24, at Seattle Children’s.  We thank God for giving Allistaire 7 cancer-free months since she ended her treatment!!!