Monthly Archives: March 2013

Rejection, Acceptance and the wonders of potholes

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IMG_1564IMG_1566The door opened on Wednesday morning and the nurse joyously said to Allistiare, “Happy Birthday!”

“It’s not my birthday day.  My hair is going to fall out,” stated Allistaire with a scowl.

Back in January, around the time of Sten’s birthday, I told Allistaire it wasn’t long until it would be her birthday – that it was coming in March.  She looked up and gazed out the window and pointed, asking with glee, “it’s coming outside?”  So Allistaire’s concept of time and events is still being formed.  I think by the end of March 6th, 2013, she had accepted that it was indeed her birthday after about the fourth present and my brother, Patrick, and sister-in-law, Briana and kids came to celebrate that evening.

Apparently, however, it has been pretty easy for Allistaire to accept that her hair will fall out.  We have this little board book at home all about teeth – how you find them everywhere.  And you have two sets, set one and set two and that you’ll lose set number one but then you’ll get set number two. But don’t be like Billy Billings who has fifty fillings, presumbably due to the ridiculous amount of junk food he is pictured gobbling up.  The truth of this book has been aided by Solveig getting her first wiggly tooth.  Thus, it has been a simple connection to say, “your hair will fall out, but then you’ll get new hair.”  She seems at ease with this idea.  I told her that when it starts to fall out, I will cut it short and she will be beautiful.  And she will be beautiful, despite losing her Farrah Fawcett feathered wisps.  What I will miss the most is her extravagant bed head and her new found joy of twisting her hair around her fingers.

It has been an eventful week for Allistaire in addition to her birthday.  On Monday night she received her last infusions of chemo for this round.  Tuesday afternoon brought the last GCSF shot much to Allistaire’s great relief.  She hated them and refused to let me remove the bandaids from the previous shots resulting in about five bandaids on her thighs at one time.  Tuesday was also Allistaire’s first dressing change of the clear sticky patch that covers her Hickman catheter.  This was the single most terrifying aspect of Allistaire’s treatment last time – at least from her vantage point.  I wish I could report this time it was easier but it wasn’t.  Allistaire refused for quite a while as we tried to convince her to play with her iPad while I used the adhesive remover to get off the old dressing, rather than having to hold her down.  She cried and shivered and shook and her eyes were wild with fear.  My hands trembled as I slowly and as gently as possible removed the patch that probably pulled on her still-sore chest where they “tunneled” under her fat to place the line.  Julie, our child-life specialist, was actually encouraged however, because Allistaire did eventually stay relatively still and de-escalated quickly.  She said that these indicated the degree of fear Allistaire was actually experiencing.  She also noted that most kids kick and flail their arms and try to run away.

Wednesday was not only the day we celebrated the day Allistaire popped out three years ago.  It was also the day she received an infusion of expanded cord blood cells.  The stem cells housed in the umbilical cord of some other mother’s child, went into my child that morning.  Isn’t that wild?  Sten and I chose to enroll Allistaire in a clinical study that at this point is looking at the safety of giving pediatric patients expanded cord blood cells.  So I tried really, really hard to listen and understand what the doctor was saying as she attempted an explanation but I sadly know most of it went over my head.  Here’s what I think I understand.  The researchers select specific cells from the cord blood based on the expression of their cell-surface antigens.  They are looking for the progenitor cells which are the stem cells that have the ability to “proliferate and give rise to functioal progeny.”  They then “expand” or grow these cells to greater numbers in the lab.  They in turn give these to Allistaire through her IV with the idea that they will produce the white blood cells our bodies rely on to protect us against all sorts of invaders which would bring us down if we were without defense.  The goal of the chemo Allistaire gets is to destroy the cancer cells in her body including those in her bone marrow.  However, in so doing, all the good cells are destroyed as well, thus leaving her vulnerable.  This extreme vulnerablity is the reasoning behind keeping Allistaire in the hospital while her blood counts drop and rise again.  Many carefully thought out procedures are in place on our SCCA unit all with the purpose to minimize as much as possible, exposure to bacteria and viruses that could kill Allistaire while her body is defenseless.  The idea behind the clinical study is to use the cord blood cells as a temporary stand-in immune system to protect Allistaire while her own is non-existent.  Because the clinicians remove the T-cells that would otherwise attack Allistaire as a foreign body, the cord blood cells are no more closely matched than any other blood products she receives like red blood and platelets.  Allistaire was given a number of meds to prepare her for the infusion and many labs were drawn at very specific intervals to ensure Allistaire’s safety.  Next week, on day 15, they will draw blood to determine the amount of blood cells that came from the cord blood cells Allistaire received as compared to the amount that are her own blood.  This is known as “chimerism.”  This word comes from Greek Mythology that tells of a monstrous fire-breathing female creature composed of a goat, lion and a serpent.

The coming days and weeks are now simply a matter of waiting for her blood counts to drop due to the chemo doing it’s destructive job and then her marrow recovering to produce its own cells again.  Of course the hope is that all of the cancer cells would have been destroyed, and that only her healthy cells would come back.  In this time the most important things for Allistaire is to help protect her against bacteria and viruses and to support her body with red blood and platelets as she needs them.  Yesterday she received her first transfusion since since coming back.  She gets transfusions of platelets when her count gets to 10 as they did yesterday, and red blood transfusions once her hematocrit reaches 20.  I expect she will need red blood in the next day or two.  Today marks 12 days since she began her chemo regimen.  Sometime between day 28 to day 35, she will have another bone marrow draw to determine the amount of any remaining cancer cells.  She may also need to have a biopsy of her back and or lymph nodes.

Allistaire is doing really, really well so far!  She has not thrown up so far.  Last time she only threw up once, and that only after I pushed her too hard to drink too much milk.  The last time she was weighed, which was several days ago, she had not yet lost any weight despite not really eating much food.  This time around, I have decided that while I will continue to work to strongly encourage her to eat, I will not push as hard.  I tell her, “you can either eat the food with your mouth or the doctor will put a tube in your nose so the food can get into your tummy through your nose.”  She usually looks toward the door of her room with fear in her eyes and puts a bite of food in her mouth.    She has really been enjoying playing all sorts of great games on her new iPad that Sten’s company, Beartooth Capital, purchased for her.  They have been so kind and supportive to our family and we are immensely grateful for them!  Allistaire has also had the opportunity to try out painting thanks to the sweet Art Therapy volunteer, Annie.  She continues to get out and ride bikes and push around her stroller and thankfully, enjoys the Purell hand sanitizer dispenser so much that she runs for the sanitizer many times while we are out of her room playing.

I am going to wrap up this post with a whole bunch of pictures because Solveig, Grandma JoMarie, Uncle Jens and Aunt Jo are only about an hour away from arriving to visit for the week!  We are SO excited! Oh and “potholes,” that’s what we call belly buttons.  Just so thankful to know that Allistaire’s pothole is evidence of her coming from her me – the joy of giving birth to her 3 years.  Also, so thankful to whoever that mom is that decided to give away the cord that gave her own child life, to help the life of my child.

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Pangaea

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If you have seven minutes, then close your eyes and listen to this song, if it can be called that – this landscape outlined and colored in sound:  Jonsi Go Track 11

The notes begin, scattering, skimming, brightening, expanding, rising, growing, swelling.  Light scattered, touching the nearest surfaces, skimming the edges of the land, the blade of Spanish Peaks pink as sun hits snow.  Up, up, over, spilling down like liquid filling, spreading, expanding, plane after plane illuminated.  Tree after tree lit up bright, light, growing, swelling.  Dark, turning, turning, transcending, moving, rising up to Day.  Like water racing down hill to fill every low spot, so the sunlight spreads its hands and fingers and touches, touches all darkness.

This is the eleventh track on the album and I could listen over and over as it speaks and sings and expands and stretches out, out, stretches so far that the surface of reality nearly tears from the thinness and the outline of eternity shows through.  This is the music of my meditation these last months.  My eyes take in the views of extravagant beauty all around me.  Snow.  Light.  Mountain.  Valley.  Sky.  Ever changing.  Ever beautiful.  My eyes swallow the sights and chew and masticate and salivate at their sumptuous beauty.  And I take them in through eyes as ears listen to the notes that strain and stretch and they enfold my weighty sights.  Sights that sag and hang and have girth and depth and dark.

For months I saw the blackness beside me.  For months it’s gravity pulled and pulled and I pushed and pushed back just to stay upright; knowing at any moment, I could be cast down, it’s pull overcoming me.  And then…in one small stroke, without blunt force, down into the very place I had so resisted.

The contours and expanses of the blackness, like one exploring a cave, keeps stretching and expanding.  “What we know is that the statistics show that someone as high-risk as Allistaire, has no better of an outcome with one type of blood product over another.” “But what about GVHD” (Graft Versus Host Disease) I ask, “I mean she can die from that”?!  The doctor’s literal response, “pick your poison.”  Either Allistaire is at greater risk for relapse even after a transplant because her cancer can still come back or she will be at greater risk for complications from GVHD.  Either way, she has the same shot at dying or living whether she has bone marrow from a donor or stem cells from cord blood.  The 5-year survival rate is the same for both.  Wait, why is she so high-risk?  Is it because she has relapsed AML?  Or is it worse because it came back in her skin?  “Yes, both.”

Oh the ache.  How do I describe it?  All dreams tattered.  Whether I think of the 19 year old girl in the room next door who, though she is still alive after 6 years of first getting cancer then a transplant, has already had double-hip replacement and needs two new knees in the next two years, or the girl in the wheelchair, a year out from transplant.  What is this blackness?  It is death.  Ringing, stinging, biting reality that death may be sitting not far in front of us.  How long?  How can I know?  A cold could come when her defenses are down and wring her breath and take her life.  She could make it through transplant only to have her lungs or kidney’s fail months later as they did for Mario.  Whatever images I had of my daughter’s life have been ripped; a tear that will not be mended in this life.  Ovaries that will be burned by radiation.  What was it that I just read the other day?  “The total-body irradiation [for] the typical pre-bone marrow transplantation regimen [has] doses of 1,200 to 1,500 centigray…equivalent to being close to the epicenter of a nuclear bomb blast”  These words are off of the Fred Hutchinson website – the one’s who have pioneered bone marrow transplants; a reliable source.  Now those numbers are what they give an adult – but I’m sorry, do you think it’ll be much better for a little one?  What of that big lead slab that stands in the hallway – the one the nurses and doctors stand on one side while the patient stands on the other?  What are they doing to her that they need that?

This is the blackness I watched out of the corner of my eye all these months.  Either death or a ravaged body.  This is what my child gets.  These are the outcomes.  There are no more good outcomes and it hurts and hurts and aches and sears.  The guy, David, at Starbucks tells me about his next bassoon concert in mid-May.  “Oh, but you won’t be here by then,” he says matter-a-factly.  “Unless my child doesn’t make it, I will,” I respond.  Wow, the look on his face as though I can’t or perhaps I shouldn’t say things like that.  “Hey,” I say, “if I get to be here as long as the docs say we could, than we’ve had it good.”  His face contorts and he weakly says, “I guess so.”  I will not pretend.  I will not hide.  I will not back away.  I will stand and I will look that death in the eye and I will say I see you and I will stand.  I know the stakes and I will not prance around that word and pretend that it is “disease,” when this is death that is staring back at me.  I will stand and face that black and I will call it what it is and I will call out the death in a crippled life.  I will face it and I will name it.

But.  Death is not the end.  Death is not an impenetrable wall.  Death is not the end.  Black and dark are not the last color.  So as tears ran down my face and I swiped them away over and over, the Spirit of God reminded me, and the corners of my mouth turned upward and light sparked in my eyes. His ways are not our ways.  No, the well-worn paths of this life are very possibly closed off to my child.  Her life quantitatively may look different from this life we think we so want for our children, because it is the life we have sought for ourselves.  Yes, her body may be crippled by this.  It may limit her and barricade her from roads she may want to take.  But then, redemption.  But then, the ugly-beautiful.  But then, I remembered the Lord, who with giddy delight raises the dead to life, who makes darkness, light and soiled become pure.  This is the God who is over all.  This is the God who hovered over the surface of the yet unformed earth and brought life and bounty and beauty.  This is the God who is not limited, the in-finite God, the not-finite God.  He scoffs at death for He has overcome it!

How many times has He told me?  “Lift your eyes, Jai.”  Lift your eyes.  What will He do that I cannot yet see?  What is He up to that my mind cannot conceive?  I think of the crippled, broken bodies I know.  And some of these bodies house the most wondrous spirits our world has known.  Like the blind whose sense of hearing excels those whose eyes see, so perhaps a broken body allows the spirit to swell and expand and be less constrained by flesh, because it must – it will either atrophy or burst forth.  And should death take her, should her life be cut short – what then?  Will her spirit not even more so burst forth and know no more constraint?  Will she not walk with head held high with joy and no more suffering or tears or pain?

I do see death.  Every time I rub Allistaire’s back I am confronted with that wretched bulge on her back that is the tangible evidence of this disease that will end in death if it cannot be stopped.  When I wrapped Allistaire’s birthday present, I wondered if I would ever wrap presents for her birthday again.  Is this the last time I fold the paper round and press the tape down?  As they wheeled Benton out, his pain finally under enough control to go home to end his days, I had to ask myself the question of where I would want Allistaire to die if it came to that – at home or in the hospital.  These are the questions that so quickly and easily invade my day.

I feel the cut and the burn and the sting.  I choose not to turn away.  I choose not to shield my eyes.  I choose to hear and let the words settle on my heart.  Why?  I cannot say exactly.  But somehow it seems better to me, for me, to stand facing that biting cold wind that blasts my face and eyes.  This is life.  I want to know it.  I want to feel it.  I want to live – every bit of life.  Is this not the very life that so many on the planet face every day?  Who am I in my first world comfort to sip my Starbucks and avert my eyes?  This is as much part of what it is to be human as it was to bring Allistaire into this life – to feel her tiny body moving inside mine and to usher her out into this broken world.  I have known this child from conception and I will walk all these days with her and I will choose to have eyes to see the death and eyes that see the beauty and life that stand side by side.  I do this for her.  I do this for me.  I do this so that I might have a shot at loving better those who have known similar darkness.   I do this because I am determined to pursue my God who has not stopped pursuing me.  My jaw is set and I will not be swayed.  “He is our portion and we are His prize.”  I want to know the fullness of those wild words.

A couple months ago I sat on Allistaire’s bedroom floor, the expanse of blues and greens spreading out to fill the entire wall.  There I sat lazily gazing at the wall-size 1972-world map original to the house.  My eyes swept back and forth across the continents and without meaning to, I found I was enjoying seeing how one land mass fit so nicely, snuggled up against another despite an ocean dividing a vast distance in between.  I smiled as I considered the east coast of South America and the west coast of the African continent.  I wondered how wild a theory Pangaea must have sounded 500 years ago, 1,000 years ago.  Absurdity.  Ridiculous.  Impossible.  Now we still don’t have proof but as one stands back and sees the whole earth in one view, it does not seem so absurd.  It all seems to make sense.

I was talking with someone at the hospital the other day, who said that she has seen enough of pain and hurt and death that when she gets to heaven she will demand some answers.  Naw, I don’t think so.  I think the first unfiltered glimpse of the glory of God, who sees all and knows all and determines all, will simply silence us.  We will know the absurdity of demanding answers.  We will taste and see that the Lord is good.IMG_1519

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In response to all of your kind offers to help…

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IMG_1501Sten and I sincerely appreciate all of the many inquiries and offers to help us in this challenging time.  Many of you have already helped us so much and continue to offer more.  Honestly, it is awkward to just come out straight and tell you what we need and what would be helpful, but having become with familiar with our reality from Allistaire’s first time around fighting cancer, we know both the specifics and the immensity of our need much clearer than the first time.

Here are a few things that would without a doubt be helpful overall:

Pray for us

Call us up on the phone and even if we don’t pick up or call you back, know that we have felt the love

Send us a card and better yet – a picture of you to remind us of all those caring for and supporting us

Gas cards (Costco, Exxon, 76)

Cash is always helpful

Assistance with plane tickets to help us go back and forth from Bozeman to Seattle easier and quicker (you can transfer miles to us or contact us to arrange the purchase of a ticket, or help with a portion of a ticket)

For Sten and Solveig specifically:

Bring Solveig and Sten a meal.  We have set up an online meal schedule which will give you all the details.  You can click here and then under the heading, “Find a Meal Schedule…” enter the last name, “Anderson,” and the password: 2397

You can then sign up to bring them a meal on a Monday or Thursday.  Please look over what other folks are bringing so they don’t end up eating the same thing for a week or two straight.

If you’re not much of a cook or in a hurry but still want to help out, a gift card would be great (Co-Op, Papa Murphy’s, Town & Country, Sola Cafe, Pizza Campania)

Sten & Solveig’s address in Bozeman: 14176 Kelly Canyon Rd, Bozeman, MT 59715

For Allistaire and Jai specifically:

Please don’t send stuffed animals, crayons or makers = we already have SO many 🙂

You can sign up to bring Jai a meal on the “Take Them a Meal Website,” as well.  Click here and then enter the last name, “Anderson,” and the password: 3610

Gift cards to local grocery store and restaurants (University Village, QFC, Pagliacci Pizza, Metropolitan Market, Starbucks)

Target cards – Allistaire uses a lot of diapers these days with all of the fluids she is on and she’s getting bigger because of the steroids which means bigger clothes.

Mixed CDs with happy music for Allistaire

Address for Allistaire & Jai:  Ronald McDonald House, Attn:  Allistaire Anderson/B 14, 5130 40th Ave NE, Seattle, WA 98105

Thank you immensely for all of your kindness, generosity and love toward us.  You certainly diminish the weight of our heavy load and add joy to our lives!IMG_1506 IMG_1516

For the love of a sea sponge

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Purple_Cup_SpongesAt 8pm last night Allistaire began her chemo.  For thirty minutes she received Fludarabine through her IV/Hickman Catheter.  Later, at 11:30 she had a four-hour infusion of Cytarabine.  She will have this same chemo regiment for the following four nights.  In addition, she has seven days of GCSF shots which started the day before she began chemo and will end the day after her chemo is complete.

So here’s the cool thing, not that I really understand it, but it is still SO amazing!  God made this sea sponge, Tectitethya crypta, that has its happy, beautiful home in the Caribbean.  One day in the 1950’s, somehow it came to pass that some folks were able to  isolate two nucleosides from this unassuming creature.  These nucleosides contained an arabinoside sugar rather than a ribose sugar.  In our human DNA, a cytosine base usually combines with the sugar ribose, but in the sea sponge, cytosine is combined with the arabinoside sugar.  What is the point?  Well, the amazing thing is that this combination of cytosine and the arabinoside sugar is similar enough to the combination of cytosine and the other sugar, ribose, that the sea sponge combo can be incorporated into human DNA but it prevents the synthesis of the DNA – which in turns kills the cell!  Sweet!!!  Do you get it?  Put something in the body that looks like it belongs there, sneak it inside like a Trojan horse and BAM – put a cog in the wheel and down, down comes the big monster!  This is the infantile history of Allistaire’s chemotherapy, Cytarabine.  Doxorubicin and Etoposide, two of her chemo drugs from her first time battling AML, came from the American Mayapple and some soil-based microbe in Italy, respectively.

Back to FLAG, which is the name of this chemo protocol for relapsed AML.  The “F” in FLAG, stands for, “Filgrastim,” the brand name for the GCSF shots.  GCSF stands for Granulocyte colony stimulating factor which in simple terms, causes the bone marrow to rapidly produce white blood cells.  Allistaire received her first GCSF shot on Wednesday evening at 6pm.  Wednesday morning, prior to the shot, Allistaire’s ANC was 1420.  Twenty-four hours later, her ANC shot up to 11,724.  I had to do a double-take when I read that number – I mean I’ve never seen that many digits.  Often these shots are give to people who have non-blood cancers, after they are given chemo, to stimulate their marrow to make the white blood cells that protect against infection.  With folks like Allistiare who’s very marrow is the source of cancer, they are left vulnerable with no white blood cells, until their marrow heals on its own.  I was a bit confused when I heard that Allistaire’s cancer treatment would begin with making more cancer cells as a result of these shots.  As I understand it, it is all a matter of timing.  Because chemo works most effectively against rapidly dividing cells, this speeding up of cell production in the marrow, actually allows the chemo to more effectively target and destroy the cancer cells.  Basically, you get the cancer cells to start dividing like crazy and then hit it hard with that cog in the wheel that is especially adept at taking down the speedy guys and before you know it – you have a battlefield littered with dead bodies – guts all spilling out, lifeless.  That’s the goal.

I know for at least a few of you, you will never make it to even reading this paragraph because your eyes are crossing and your brain is melting and glazing over with all the numbers and funky names most of us have no clue how to pronounce.  So, for tonight I won’t go on to the piece about the clinical trial Allistaire is enrolled in.  I’ll save that for another night.  But may I challenge you just a bit?  Push yourself to think about it.  Feel the ache of your mind trying to grasp such details.  Let yourself feel the annoyance of being overwhelmed with confusion.  Force yourself to consider the complexity.  When you do, when I do, we are taking the tiniest taste of God’s glory.  Don’t deprive yourself.  Eat.  Drink.  Soak in the wonder of what He has done.  Let your mind’s eye see the innocent sea sponge shimmering beneath clear blue waters.  How long has it lived there on the bottom of the sea harboring its beautiful secrets.  Yes, I feel the ache and searing pain of dwelling in a creation fallen by sin and cursed.  I hated to hear Dr. Pollard say that Allistaire could have been born with the MLL (Multi-lineage Leukemia) chromosomal rearrangement that was the precursor of her cancer.  I hate that we are born broken.  But see that purple, rippling below the waves?  We are not only curse.  The earth is not only broken and hurt.  It is bearing the beauty and life of the One who created it.  At the very moment of the curse in Genesis 3, there was also the promise of redemption, of life.  He has not walked away.  Look up.  Look out.  Be alert.  Beautiful life may be hidden where you least expect it.