Allistaire’s Memorial Service Details – Final Update!

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084Allistaire

(All are welcome to attend either or both services)

Memorial Worship Service

(For the purpose of worshiping and submitting our lives to Jesus Christ as Lord)

Saturday, June 11th @ 10:30am

Petra Academy (4720 Classical Way, Bozeman, MT 59718)PetraClosePano_edit_edited-2-e1439256951353*Seating is limited.  If you’re coming from out-of-town, please be sure to arrive early to ensure a seat.  The service will be recorded and a link to the recording will be provided at some future point.  There is no child care provided.

*For those who don’t wish to attend this morning Memorial Worship Service, you are welcome to join Sten on a hike up the “M” trail.  Meet at the trailhead @9:30am.  (Directions:  Follow Rouse Ave. north (becomes Bridger Canyon Rd.).Turn left into the signed trailhead parking lot on left)

 

Celebration of Life Service

(A time to focus on Allistaire’s life)

Saturday, June 11th @ 6:30pm (MST)

The Commons (1794 Baxter Ln E, Bozeman, MT 59718)Logo-Dark-2

  • A dessert reception (cupcakes, ice cream sandwiches and coffee) will follow the service
  • Childcare for all ages WILL be available, including a live video feed into the childcare rooms for parents who want to stay with their children
  • Watch the Service LIVE, go to this LIVE STEAM LINK.  You will need to register for a Free Live Stream Account ahead of time to watch (we recommend signing up Friday or Saturday morning so you won’t be delayed in watching the 6:30 service)

Feel free to wear whatever you feel comfortable wearing, though our one request is that if possible, please weary cheery colors.  Allistaire was a girl who delighted in the full spectrum of the rainbow and it would be fun for our many bodies to reflect that joy as we gather together in honor of her life. Here are a few examples, the first being an outfit designed by Allistaire on her Toca Boca Tailor App (you don’t have to go quite this wild, but you get the picture):
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Awesome Gift Basket Raffle

Sten, Solveig and I have pulled together a whole load of happy (new) items that were things that brought Allistaire delight. We are putting these together in a super fun gift basket which will be raffled off at the reception.  Raffle tickets are $1 each (so bring your cash) and all proceeds will go to The Bozeman 3.

Bozeman Three_IMG_4719_4x6_300ppiThe Bozeman 3 is a local non-profit that supports families in Gallatin County whose child has been diagnosed with cancer.  The Bozeman 3 arose out of a unique bond between three families forged in their shared experience of fighting for the lives of their children diagnosed with pediatric cancer, far from the support and beauty of their homes in the Gallatin Valley of Montana. They met in the hallways of Seattle Children’s Hospital’s Oncology Unit in early 2012. While each child faced a different form of cancer, these children, along with their parents, possessed a resolve to fight. (Our family is one of these original three, along with those of Stellablue Woods and Caden Shrauger pictured above with Allistaire)

The Bozeman 3 financially supports local families whose child has cancer, provides peer support and helps fund cancer research.

Many of the items included in the gift basket (totalling over $200) are pictured below:
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We Could Use Your Help!

We have been absolutely overwhelmed with an outpouring of love and support, not only in the past four and a half years, but again in this exceptionally hard time in the wake of actually losing Allistaire.  For those who are still yearning to help, below are a number of key ways we would graciously appreciate assistance:

  • We asked for 300 cupcakes and have had far more offered – thank you again for your outpouring of kindness and love.  At this point we no longer need any additional cupcakes.  For those who have already offered, keep Rhonda Mattson’s contact handy if you have any questions (rhondamattson33@yahoo.com (406) 451-6571).  And remember, ideally, we would like you to deliver your cupcakes to the main central doors at The Commons by 6:15pm on the day of the  Celebration of Life Service, June 11th. A volunteer will greet you at the door to receive your cupcakes.  (Below is an example of the look for the cupcakes we’re going for)FICC3705

 

  • We have created a “Wish List” on Amazon of items we could use help purchasing including plates, cups, napkins and sprinkles (to be applied to the ice cream sandwiches).  WOW!!!!  All the needed items have already been purchased less than 12 hours after posting the Amazon Link, so I have now removed it. Thank you folks!!!!!
  • The meal sign-up has been updated to reflect request for group dinners for a few days prior and after the memorial services.  Provision of meals has been an incredible help and we so appreciate all the tasty food!!!  To sign up to bring meals click HERE.

 

***A note to out-of-town folks: The weather in Bozeman can vary wildly with temperatures down into the 30s at night, potentially, all the way up into the 80s some days.  I would highly advise paying attention to weather as you pack and always bring a warm coat.

Thank you to so many folks who have shown their love to me personally and to our family in this past month plus.  Thank you for your cards and messages of condolence and how knowing Allistaire has impacted your life, for texts and phone calls, gifts, meals, offers to help and prayers.  Please know that all of these have been gratefully received though my ability to thank you is radically diminished and delayed.

The truth is this past near month since Allistaire died, has been a strange, mixed time which I hope to write in reflection upon more down the road.  Part of our reality is that I have been very busy with my trip back to Seattle to clear out our Ron Don apartment and say thank you and goodbye to folks and all of the work necessary to put together these two memorial services in honor of Allistaire.  In the midst of this I have two dear friends whose children have received the most awful of news – that like Allistaire, their disease has returned and grown and there is now no more treatment available to them.  I have a third friend whose child could soon be in the same position, not to mention my two friends who have recently lost their sweet girls.  My heart is still very much with these friends and if I have to prioritize my limited time and energy, it will go toward them, despite my inability to give to them in nearly the degree I desire.  I have also been able to spend time cleaning and organizing spaces in our home long neglected in my absence and enjoying being outside doing refreshing physical labor like mowing the lawn and hauling limbs that came crashing down under the weight of the fantastic snow storm a few weeks ago.

Mostly I have loved the quiet.  There are few sounds but that of bird chatter and wind in the fir and aspen trees.  With my brother-in-law, Jens’, idea of his spirit animal being a grizzly bear in mind, we have chosen the Mountain Blue Bird to be a tangible reminder of our bright blue-eyed little girl.  Mountain blue birds abound here and a family has taken up residence in the bird house across our driveway.  Throughout the morning and day, I can often look out my kitchen window and see the bright blue of sky in the form of bird sitting on the fence rail.  I of course don’t actually need a reminder of Allistaire to remember her – she is ever on my heart, in my thoughts and scattered throughout my dreams at night, but it is uniquely lovely to observe a creature of such beauty and loft – a creature that can flit about and sail up into the sky.  It helps my heart to not only grieve the loss of Allistaire in my life, but imagine in the smallest way, the joy of the life she now lives.

I look forward, with joy, to seeing many of your faces old and new, who have so loved our Allistaire and cared for our family.birdmountainbluebirdmale

 

 

 

Bouey

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IMG_0903The four of us are bound together in the water.  Allistaire is linked to me and I to Sten, Sten to Solveig.  We’re out there, floating along, living life.  Then something dark comes and latches onto Allistaire and starts pulling her down.  I’m flailing, trying to pull her up, my own face and mouth gulping water, waves lashing.  Sometimes that thing is so small, we barely notice it.  Most often we manage it.  Regardless, it’s always there, always threatening, looming.  Though the times where the black thing swells and we are all being pulled down into the water is familiar, the terror is always sharp and stinging.  Panic.  Gasping for breath.  But we’ve fought it so long…it is the fifth member of our life.

And then…with no seeming warning, that black presence swells with exponential density…Allistaire is snatched off the line.  We wail, we scream, but there’s nothing we can do.  We watch her being pulled under, down, down, down into the deep dark of water.  She disappears from our sight.

We bouey up.

Our striving ceases.  All of sudden there is quiet.  No longer need for exertion.  There is finally a release of the tension, the ever-ringing backdrop gone.  There is no longer a tug, a constant pull on the line.

But now we are three and this relief has come at the cost of our sweet girl, our beloved Allistaire.

It suddenly occurred to me the other day that I have taken the last picture of Allistaire.  There are no more pictures to be taken.  No new stories to tell.

On Saturday, June 11th, 2016, we will be having two separate services.  In the morning around 10:30/11:00am, there will be the opportunity to worship God, to fix our eyes on Jesus Christ who calls those that follow Him out onto the water, who asks us to lay down our lives and entrust our whole selves to Him, the One True God, the Holy God, the God who is other and infinite.  In the evening, we will focus our time on remembering our beloved Allistaire Kieron Anderson and the incredible community of folk that have been such an amazing support along this difficult road.  All are invited to come to either or both services, but please understand they are for very distinct purposes. There will be more details to come.

**Seattle folks – I’m sorry to say, that while I really wanted to be able to hold some sort of memorial out there, I just don’t think I can make it happen.  I’m bone tired and so we invite you to come to the Big Sky State – the homeland Allistaire so loved.

***If you would like to offer housing to folks coming in from out-of-town for the memorial OR if you are interested in staying with a local family, please contact my sister-in-law Jessica at either “pederandjess@gmail.com” or (406) 850-3996.

Lastly, a 3 minute Obliteride promo video featuring Allistaire was just released today.  Allistaire and I both have invested a great deal of time and heart into allowing her story to be told in order that people would be compelled to join the effort to accelerate cancer research and find cures faster – so moms won’t have to tell their little girls that they are going to die because there is no more medicine to fight their sickness.

Please, it would be bring me joy, if you would take a moment and see our sweet girl’s smiling face and goofy laugh in this OBLITERIDE VIDEO.

Thank you to all who have so generously given to support me in Obliteride and fund cancer research.  For those who have yet to do so but would like to, you can donate in my name in honor of Allistaire and/or those you love who are battling or have battled cancer, HERE.  Please know that 100% of funds donated go directly to cancer research at Fred Hutchinson Cancer Research Center (of which our local Bozeman Cancer Center is connected via Seattle Cancer Care Alliance – a collaboration between Fred Hutch, the University of Washington, and Seattle Children’s Hospital).

 

 

Still

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IMG_0832IMG_0899I cannot count the hours I have laid next to Allistaire with this quiet music playing.  Putting her to bed for a nap, closing the curtain to her hospital room and posting the sign telling the world to stay away, Allistaire is sleeping.  Laying next to her in Ron Don, going through our night-time rituals.

The music plays on but she is gone.  Gone.  The bed is empty.

After four and a half years of fighting her great foe, Acute Myeloid Leukemia…after two long grueling weeks since Sten and I made the brutal decision to no longer attempt to thwart her disease, an aggressive, relentless, mindless onslaught…after over three hours, as her body continued to fight, to grasp for life, lungs pulling for air, and a heart, oh her heart, far stronger than we could have ever imagined, that heart so determined, so fierce, it pumped on and on and still her mouth gulped for air when her chest no longer rose and there was not one flex of her heart muscle left…

And then stillness.  Only the soft rushing sound of the oxygen still trying to sustain life.

Quiet

Utter stillness

How very strange to come to the end.  To have this child between us, this longed for child that together we had conceived, this little bright vibrancy now extinguished, pale, still.

We love you little sweets, beyond words and time, you are so very dear to us.

Allistaire Kieron Anderson died early this morning at 1:33am, April 30th 2016

 

My deep and fervent desire has been that these most vicious versions of Allistaire’s cancer cells would be able to be studied and contribute to the understanding of AML, in honor of all that Allistaire went through and in blessing to those who will be forced to come behind her.  Dr. Soheil Meshinchi, one of our spectacular, brilliant and tender-hearted Bone Marrow Transplant doctors at Fred Hutch, made a way for this final offering.  Soheil is the COG (Children’s Oncology Group) AML Biology chair and oversees the largest pediatric AML tissue bank in the nation.  Along with other doctors/researchers dear to our hearts (Dr. Katherine Tarlock, Dr. Marie Bleakley, Dr. Phil Greenberg, Dr. Todd Cooper), he is tireless in his pursuit of understanding AML and finding ways to thwart its stranglehold on so many sweet children.

These are the words of Dr. Soheil Meshinchi to me:

“I will do everything I can to learn all we can about Allistaire’s leukemia.  Her diagnostic sample is being sequenced now and we will sequence specimens that you send us…Please feel free to call me anytime you want to talk.”

“My prayers are with Allistaire and your family.  We will care for these precious cells of Allistaire.  Please call me if there is anything I can do.”

And this comes from him this very morning, “Dear Jai, I wanted to give you an update on Allistaire’s cells.  We received them in great condition.  They were processed and a fraction was used for extracting RNA and DNA.  We purified leukemic cells from another subset and banked several vials.  We are waiting for the result of the foundation medicine testing with plans to sequence her recent cells as well.  I’m available to talk anytime you need to.  Best, Soheil.”

Allistaire’s life was strangled out by cancer and while I look in hope for her to have a new body, one incorruptible, I also strive after life here and now.

Please considering honoring Allistaire’s life and tremendous fight by supporting cancer research at Fred Hutchinson Cancer Research Center.  You can join our team Baldy Tops or give financially to Obliteride HERE.

*We will be planning some means of memorial in the future, but have no plans as of yet.

**Allistaire is alive in all of these pictures (with the exception of the very last picture of her toes), though they are either days or even only several hours before she died.  Some may find these very difficult to see.IMG_3726IMG_0657IMG_0659IMG_0236IMG_0733IMG_0736IMG_0760IMG_0849IMG_0884IMG_0887IMG_0895IMG_0897

Call Me Sapphire

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IMG_0676Each day, usually late in the afternoon, a call goes out, a harkening…”Let’s play family,” Allistaire implores.  And often a personal invitation, no, more like demand, is carried by messengers to individuals, “Sten, Allistaire wants you to come play family…Jojo and Taryn, Allistaire wants you to play family.”  It’s sort of weird because we’re already family so how do you play family?  Down in the Rec Room we go.  “Make a fort Mommy.”  And so I use the armoire and the hot pink tipi and we drapes sheets and Solveig recommends using hairbands to get the sheets to stay on the top of the tipi poles, it seems she’s done this before.  “No, turn the tipi around,” Allistaire says emphatically.  And we turn the tipi so that it’s entrance now is within the fort, so that it is a room within rooms and within it we put the pillows and the blankets and Allistaire is brought in and curls up tight in the little dark space, just a small pretend camping lamp inside to illuminate the curvatures of her sweet face.  She is always either the baby or the little sister.  This time it is just us girls and we are picking names for ourselves from the realm of jewels.  Solveig proclaims in loud voice over and over that she is Peridot.  Lucy considers the name Ruby.  Jo is Emerald and Taryn, Opal.  I choose Labrardorite, an ugly name but my favorite stone.  I’d heard that Allistaire had chosen Sapphire for herself, so I leaned my head into the door of the tipi to confirm.  “So you’re Sapphire?”  “Well,”and she considers for a long while, “I’m Sapphire Rainbow Sparkle Jewel.”  So as our play proceeds I keep calling her Sapphire Rainbow Sparkle Jewel.

“Mom, just call me Sapphire,” she says to me as though it was so obvious, I should have known.  And my heart smiles at her love of color and her delight in the fanciful, and my smile droops and the edges of my eyes tilt down, everything bathed in thin warm sadness.

“Your eyes saw my unformed substance;
in your book were written, every one of them,
the days that were formed for me,
when as yet there was none of them.
How precious to me are your thoughts, O God!
How vast is the sum of them! (Psalm 139:15-17)

Outside are the exotic sounds of Sandhill cranes passing over in the cool gray of this Saturday morning.  In days of old, days far to rare, Saturdays in which we four were all living in this same house, we would sit at the kitchen island enjoying chocolate chip and apple pancakes.  How few have been those mornings and this morning?  This seems most likely Allistaire’s last Saturday morning, a reality the mind can sort of grasp, but the heart gasps and gags, and everywhere wide eyes and the question, how can this be?

It’s funny how a few days of the same thing can lull you into thinking, ah, we have this routine, this is the way things will go.  For Monday and Tuesday looked largely the same, with Allistaire sleeping in late until 10:30 or 11 and then we bring her up from her room to sit on the old green couch, the $1,000 Ikea couch now eighteen years old, faded green velvet that has been the backdrop for so much of my life.  Sten patiently works with Allistaire to get in all of her morning meds, with she often moving in what seems impossibly slow motion, her hand holding the pills just millimeters from her tongue for what feels like minutes.  And then I would scrounge around through the few clothes we brought and the bins and bins of Solveig’s old clothes in storage, to find a shirt that will fit over her grand distended belly.  And sometimes the exertion of all this resulted in her falling quickly back to sleep for a few hours there on the couch.  Eventually the cousins and the sister-in-laws would be beckoned to return.  Allistaire would perk up in their presence and remain awake and engaged the rest of the day, though in a far more subdued and constrained way than her old self.

Wednesday began like the previous days so we had planned to meet up at the Museum of the Rockies around noon, knowing the absolute exploding zeal my nephew, Eli, would have over the dinosaurs.  We brought the stroller and tucked Allistaire in under blankets.  The planetarium show was about to begin and so we funneled toward the door where I was stopped and told, “No Strollers.”  My mind and words fumbled and all I could get out was, “She’s on hospice.”  We were allowed to proceed and were met with some sad Adele song before the program began.  There in that alien like green like of the glowing domed ceiling, I cried and cried as Allistaire slept silently and Solveig held her hand.  These outings, these things meant for fun and education, possible now only because she’s dying.  I never wanted to bring her home to die.  Dr. Cooper always warned of “going down in flames in the ICU.”  That always held a certain appeal.  I had no problem with that idea.  Let’s bring this to an end hard and fast, fighting to the last moment, pushing for life and rallying every force to uphold life until in one swift strike it might all be done.  But this?  This simultaneous rapid yet so slow deterioration of the girl that burst with life, this fading and blurring, this slow strangling?

The hospice nurse, Joyce, came up Thursday mid-morning to draw labs.  When she was done I changed both caps and flushed both lines.  No, I don’t need any flushes or alcohol wipes, I am amply supplied with more than you can imagine as Seattle Children’s home care has always been over eager in their provision of line-care supplies.  Allistaire’s all set for the day and in early afternoon I head down to what used to be Walgreens Infusion Center but is now Option Care, to pick up hydration supplies and be trained on their infusion pump.  Angie (Dr. Ostrowski) calls me in the middle of our training time to give me lab results.  Almost amusingly her kidneys and liver look great, even her hematocrit has oddly risen from 30 to 35 since Monday.  Her potassium, phosphorus and uric acid are actually quite low which is strange given that these electrolytes usually rise with tumor lysis (cell death) which is clearly happening given her LDH which has jumped up to 1,700 (normal high is 200).

What smacks me in the face are blasts.  Thirteen percent of her peripheral blood are leukemic blasts, making the ABC (Absolute Blast Count) 700.  This is the first time I’ve seen blasts in her blood since November of 2014 and the onslaught is not subtle, they are coming hard and fast.  And I cannot tell you how savagely I detest blasts.  They are the dark hordes of an army on the horizon, advancing and destruction goes with them.  When I finally got home I was shaking from hunger and I did not want comfort.  My instinct was to take that pyrex bowl of pulled pork and hurl it with all might might, eager to see it smash and shatter with terrible violence.  We’ve been in this place before, nay, we’ve been in worse spots, but never, never have I had to simply stand back and allow this beast to take her.  Everything about this cuts hard agains the grain, my hands flex in fists and my jaw is set hard.  I want to bellow some primal scream, a wail, a fury.  Look!  Look!  The girl’s body fights on.  The kidneys, they hold.  The liver it holds.  The heart beats on.  The lungs fill, pulling in air and the blood sends the oxygen hurtling throughout all the furthest reaches of her flesh.  Her flesh fights on!  Are we to simply stand by?  Are we to be accessories to crime?

And my pleading question repeats, “Is there really nothing?  Nothing left for her?”  Have you queried all your contacts?  Have you circled the earth? Have you scoured and sought?

Nothing.  There is nothing left for her.

And I know, I know.  Ten million dollars.  Four and a half years.  Twenty-two long hard rounds of chemo.  One genetically modified T-cell therapy.  Two bone marrow transplants.  Three separate attempts at focal radiation.  There very best minds, tenacious wills and kind compassionate hearts.  And it’s not enough.  Still the cells march on and this time, this time there is nothing to stop them.

When I consider all that her little body has had to endure, what has been asked of it…numerous infections of RSV, C-Diff, Streptococcus viridans and typhlitus, on top of all the vast array of toxins gathered from the likes of the May Apple plant (Etoposide), the purple sea sponge (Cytarabine), soil bacteria, laboratory concoctions – sophisticated molecules with microscopic weaponry capable of disrupting mitotic spindles, slicing DNA and robbing the cell of its nutrients…I am in awe.  Her heart, lungs, kidneys, liver, immune system – they’ve all been called upon over and over to respond to the most aggressive of assaults.  They’ve rallied.  Her body has fought so hard for so long.  And it presses on, not knowing that this time there will be no special forces bring aid, there are no barricades.  There are now no means of escape.

I have heard Allistaire repeatedly described as incredibly strong and brave.  She is strong.  She was knit together with a fierce fortitude.  But she has never tried to be brave.  She has never attempted to rally her courage.  Rather she has yelled at times repeatedly, “I’m terrified, I’m terrified, I’m terrified!”  Fearful things have come and she has called them what they are and she has walked into the fray and over and over shown herself to be resilient.  Perhaps this is not an entirely fair description.  She has in fact learned to calm herself, to close her eyes and breath slow, to repeat to herself, “You got this.  You got this.”  And yet, it seems that she just just is brave and perhaps this is because she knows no other way.  When she was a mere 21 months old, she was called upon to endure, to press forward, to persist through pain, to do the hard thing over and over and over.  While she has experienced so much brokenness,  I longed to see what all this fortitude and perseverance would yield in her adulthood. What sort of woman would she become?

The world will never know Allistaire Kieron Anderson as a name on a resume or on a wedding invitation.  Her life has been cut ever so short.  But are these the right words?  Does this phrase really aptly describe?  What is true is that we all desperately wanted more.  My heart keeps whispering with sad insistence, it wasn’t enough.  I did not get enough of that girl.  There are not enough pictures of two sisters together.  My eyes will never get enough of taking in the sapphire sparkle of her eyes, the glee of her voice, the tenderness of her words, the curve of her chin and perfect dimples.  Is there anything more wondrous as a parent than getting to bear witness to the miraculous unfurling of a child’s body and spirit?  Do we not all stand in awe that are children’s legs, those legs which once curled up tight in our bodies, look, they are now so absurdly long.  How has this come to be?  How has cell added to cell to cell to cell to at last make this leg that can no longer fit on our laps but spills out all haphazardly and is quick to flit away?  How is this child recounting to me that the hammer head shark has two sets of eyelids?

But the question that keeps slipping in is this, What is the measure of a life?  By what standard do we proclaim with satisfaction, that a person lived a good life?  Whether we ever say it out loud or think to intentionally articulate it or not, we have engrained in our 21st Century American hearts and minds that we are due 80 good years.  Years that are marked by a happy childhood, great education, independence and self-sufficiency, a meaningful career and opportunities to explore the earth and delight in activities and accomplishments, to have a full family and at long last, to retire and spend our latter years in good health and leisure, and to eventually die surrounded by those we love and who have loved us and without pain or struggle.  That all sounds entirely wonderful and who could not or would not desire such a life?  We were created to long for life and life abundant with our whole beings, every fiber and cell intent on such vibrant life.  And in our time in history and in our western world we have been able to achieve what most of humanity throughout time and place have never known and thus our expectation is solidified and our shock and angst at not getting what we want, what we expect, intensifies and we yell out – it’s all wrong!  Six year old little girls should not die!

And the God of the Universe pounds His mighty fist in agreement and calls death the ultimate evil and promises a life to come wherein there will be no more death and there will be no more sickness or crying or pain.  Every tear will be wiped away!  Can you imagine?  And we turn to Him and rage and rage, “Then why don’t you stop this?!  Why withhold your arm that is supposedly so mighty to save?  Where is your salvation now?  Why do your turn your face away from this child?  Do you not hear the agonizing cries of those that have loved her and cherished her?  How could you possibly love this little girl if you are willing to strip away her life?  How can you call Yourself good?  And our hearts seethe and the acid of fury fills our veins and we declare with all our finite might – if you are any god ant all then you are no god I want, and we throw up our hands and storm away.

And like a parent with a child, our Father calls to us, He beseeches that we return to Him, that we take His hand and walk with Him.  That we trust.  That we cast our gaze out upon that incomprehensible sweep of space, of billions and billions of galaxies, of stars more numerous than the grains of sand on the seashore, that we consider the grass and flower that spring up for a day and then wither, that we observe the birds clothed in brilliant luminescent blue, that we watch the storm cloud racing across the valley and rising up the canyon with great flurries of snow, that we consider the glacier capable of gouging out the sides of mountains yet made of mere individual snow flakes too light to be weighed on a scale.  And He implores that we look within, into our own hearts, to the marrow of our lives, what dwells there?  Is there not a longing for eternity?  Is there not a deep grief for our brokenness, for our sin?  The God of the Universe, the Ancient of Days, the first and the last, He is not deaf to our fury, our desperate sadness.  He asks us to consider that perhaps like a child who cannot understand their parent’s reasoning, we sink deep into His love for us and rest, trust, to know that there are reasons beyond our understanding and that one day this pervading sorrow that fills the entirety of our view, will somehow be a distant memory, a minor pain as it sits alongside all the wonders of His fulfilled promises.

And it sounds audacious and we gawk at the thought that we should believe that.  And I do.  I do rest in the words of my Father because they have been far more than words.  Words that once were mere black symbols on the page, mere groupings of sounds, I have tasted of the Lord.  I have seen Him with my eyes.  I have heard His voice.  I have seen His hand in my life over and over and over.  And I will keep lifting my eyes to Him and I will keep lifting my hands to Him and I will keep lifting my voice to Him and I will keep laying down my life before Him and I will call Him Holy!  And one day I will see fully what is the measure of a life.  I will get to see the magnitude and the grandeur and bounty of what God can bring about in the small span of six years.

So my mind and eyes are set there and set here on this little girl who is slipping away from us.  Yesterday we went into the Cancer Center here in Bozeman (which is part of the Seattle Cancer Care Alliance by the way which means all you Bozemanites – guess what?  Your cancer care is directly tied to the research at Fred Hutchinson Cancer Research), so that she could get platelets.  Labs were drawn again and only one day later her blasts had risen to 21% in her blood with a total of 1,700 blasts.  When we finally arrived home she slept and slept.  In early evening the cousins arrived and dinner was nearly ready but I felt no desire for food, so I slipped out of the house to the quiet of the driveway where I could walk around the bend out of sight and just sit on the gravely surface, watch the grasses bend in the breeze, the birds flitting and twittering in the air and the hazy Spanish peaks in the distance.  I fiddled with rocks stuck in the road and remembered back to how Allistaire loved to pick out the tiny bits of colored recycled glass stuck amongst the stones.  I would find dozens of little jagged pieces of amber and green and white glass, and occasionally the treasured bit of aqua.  Then I heard my name, my mother calling, and I kept saying, “What?” and she wouldn’t answer and finally, “Allistaire’s having a hard time breathing.  Sten is looking for you.”

She was asking for oxygen and Sten said she was struggling to put together her words.  My eyes downcast, I flew to the phone to call Angie.  We had already planned to arrange oxygen to be brought up to the house; Allistaire’s oxygen saturation was down to 83%

I have no time to finish this post.  Allistaire is having seizures or strokes.  Her right side is limp and she can no longer talk.  She still hears us and understands – we have her raise her right hand for yes when we ask her questions.  Lord Come Quickly!

Good to Be Home

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IMG_0551IMG_0524It is strange to sit in my cushy arm-chair, to wake each morning while three others sleep and watch light overtake the earth, sun rising over curvature and bathing the evergreens in bright liquid green, the underbellies of clouds turning pink, the grasslands of the valley warming in yellows.  The aspens here are still leafless, but the snow now stands only in shady patches on the hills, amongst the trees.  Yesterday morning spring snow flurries filled the landscape with the swirl of bright white flakes against greening fields, the day warmed and the sky turned blue.

It feels so good, so utterly right to be home.  I feel a fool that we never even thought to include Allistaire in our decision-making about hospice, where she would end her days.  Then again, while I had considered on many occasions where I would want her to die, the truth is, the word “hospice,” absolutely knocked the wind out of me when it was first voiced last Thursday.  Hospice has always been linked with horror, the most inconceivable sorrow, the worst possible outcome. It is a word to turn from and flee from, willing your legs to run at speeds you didn’t think was possible.  All you want to do is to get away from it.  And as I have over the years been witness, sometimes from afar, sometimes closer in, to the end for many children, some going home, some dying in the hospital, I have asked myself, what would we do were it Allistaire?

Everything about the last four and half years has been held up against the question of, “what is best for Allistaire?”  All choices have been formed in accordance with the goal of providing her with the best possible care.  As I had considered those who went home and those who remained in the hospital until the end, I thought, oh, but I want so badly for those that care for my sweet girl’s body in her last days to know her as more than a body, to know the spunk and giggle of the girl whose body is betraying her.  I want to scream at the thought of her being viewed as only a heart rate, number of respirations, kidney function numbers, a pain plan.  No.  NO!  This is Allistaire Kieron Anderson, the child of my flesh, a girl hilarious and witty and beautiful and so very tender and kind of heart, a girl who will always entice you to play, who loves dress-up and colors rainbows endlessly.  It is this bright being, this girl who I so desperately longed to know as a woman, a girl who has fought so much harder than you can ever imagine, who has endured so much – she is to be handled with the greatest of care, with reverence, with delight and love.  And so I thought, I would keep her here, in this land where no only can she receive the absolute best of medical care with expertise in children, but with those who have cherished her, who have laughed with her, who have watched her grow up.  These are the people who in whom I will entrust her last days.

But somehow, it just never occurred to me that such a question might really matter to Allistaire herself and that there could be things even more precious than having those who care for her, know her.  So when we told her that she would die and asked if there was anything she really wanted, and her words came quick and clear, “I want to go home,” there was to be no denying her that wish.  And we scrambled to make that happen, and the honest truth is that I called out pediatrician in Bozeman to let her know we were coming home for a visit, primarily because if Allistaire died at home I needed Dr. Ostrowski’s help to know what to do.  Before I knew it, and without intending to, we had a “travel contract,” set up with Hospice of Bozeman.  And as we stood in the airport Saturday night with the sun going down over the Olympic Mountains, the land of my childhood, the thought of going home began to swell in my heart.  I knew that the setting of that day might be Allistaire’s last in the land of her birth, and yet home was calling in the deeps of me.

In the dark of night, the plane flew east, moonlight making the snow glow blue over endless mountains, the depth of the Cascades shocking in contrast with our perception of them from Seattle as simply a line across the eastern horizon.  On and on we flew, the mountains never seeming to let up.  The further east, the more my longing grew and in crept the thought, “I don’t want to go back.”  The urgency, the clarity of that desire turned more and more to resolve, the ambiguity of it transforming into solid matter.  I want to be home.  And why?  Why would we take her away from home again?  My rational brain spoke up telling me again how we didn’t know how well she could be cared for in Bozeman and Seattle was a land of plenty when it comes to medical care.  And while I conceded to that voice, still my heart claimed home.  And as I allowed my heart room to speak, again it became clear, how, how could we force her again to leave her home, a little girl who has hardly known home, who has been deprived of it, always being forced to buck-up and do the hard thing because the hard thing has been required to give her the best chance of survival.  But now?  Now?  Was Seattle really the only place that could provide her what she needed to keep her comfortable or could we perhaps find a way at home.

There are literally countless people who have been incredible gifts to us in this long, trying journey. And really, I think I’m tired of hearing people say “Cancer Sucks.”  With all my heart I wish Allistaire could have had the chance at a thriving life, but cancer, this wild, rogue cell of unfathomable complexity, in truth, I am in awe of it, it is a fearsome wonder that causes the humbling of the most mighty, the most intelligent, the most tenacious.  And cancer ushered us into a world we could have never chosen, a brutal road with hardships that have stripped us of so much, has gutted us and left us ragged and bleeding.  But along this very path I have at last been given eyes to see things I was previously blind to, and my wounded heart has been given entry into fellowship with those who also suffer and its longings have shifted.  This path we are told to fear, we are told to avoid at all costs and which really has stolen so much, has also had treasures scattered that can only be found here.  And it has been along this road that we have had the delight of having our lives being entwined with phenomenal people.

Dr. Angie Ostrowski has been one of many such folk and it is in large part because of her willingness to go above and beyond the requirements of her role as our pediatrician, that we can have the confidence and peace of having Allistaire remain at home.  Dr. Ostrowski came up to our home on Sunday afternoon and looked over Allistaire, a girl she has cared for the past four years, through two relapses and post bone marrow transplant.  She talked with Sten and I about our desires for Allistaire and how she along with hospice here in Bozeman and with Seattle ever available for consult, might be able to meet these needs and desires.  And while I suppose I already knew this to be true, I was reminded that even here at home, we have been blessed with excellent medical care, and more, a doctor who has known and loved my girl.

Sten and I both want what is best for Allistaire and ultimately long to care for her little self, the girl even more than the body in which she dwells.  For Sten there has been some concern about the potential difficulty of having Allistaire die in our home, and the impact of that memory for all of us going forward, however, in a commitment making a way for fulfilling as many of Allistaire’s desires as possible, we agreed to ask Allistaire whether she wanted to stay at home or go back to Seattle.  Originally our plan had been to draw labs on Monday and depending on how rapidly she seemed to be declining, we would decide whether or not to go back to Seattle.  But now, as we crouched before her sitting on the couch, and Sten asked if she wanted to stay or go back, again her words came without hesitation, as natural as breathing, “I want to stay home.”  And with that, it was decided that will not be going back to Seattle, and the absurdity of every asking her to leave home again was validated.  Why?  Why thrust this girl yet again from home?

And home, home, is not the very word calming, settling, restful?  Some think that we ought to cut our own days short when we see the likelihood of suffering coming for us.  I can only ask, what treasures, what sacred gifts might we be denying ourselves if we forego these last days?  Solveig and Allistaire sat snuggled up on the couch yesterday morning, holding hands and Solver’s arm around Allistaire, she nose sometimes nuzzling Allistaire’s bulgy cheek, Allistaire’s blue eyes looking out at valley and mountain and field.  Solveig reading story books to Allistaire while later she slept.  The two of them up in Solveig’s loft working on a craft.  Allistaire sitting with Uncle Peder, him teasing her, and her wry sense of humor jousting back.  Solveig, cousin Per and I clustered around the Candy Land board and later sitting out on the deck encircled around the little fire, roasting our marshmallows with Aunt Jo, perfecting s’mores and the challenge of just the right degree of toasting to pull of the crusty outer layer, the “scab,” and place it again over the glowing coals, the sound of wind chimes and deer in the field.  Solveig and Haaken and Per running down the driveway, flying the dragon kite with Allistaire tucked under blankets sitting enthroned in the cozy chair we set out in the grass.  Friends coming by with boxes of Kleenex and tasty food and love and a commitment to continue on as friends, never turning away when there are no words that can ease the pain.  Family flying and family driving from Washington all to gather round this amazing girl we have loved so passionately.  Home.  Where else could we possible want to be.  It feels so utterly right to be here, some satiation settling into the weary cracks of my bones.

Sometimes she sleeps when everyone is gathered round and talking and her body simply needs to rest all cozy on the couch.  And her tenacity remains as she insists on walking when it seems it could only hurt.  And somehow, the “Buddha Baby” look of being fluid over loaded, presumably from kidneys waning, has dissipated some so that her eyelids no longer seemed strained though her belly is still rotund and pulling her shirts tight, disappointing her that she could not comfortably fit into her mermaid costume.  And oddly her labs looked better overall yesterday, her creatinine down from .8 on Saturday to .52.  Her liver function numbers the same, her potassium and uric acid actually down and her GFR (rate of kidney filtration) improved.  Her platelet count and hematocrit still far enough above her transfusion thresholds that she should be fine for at least a few more days before another possible transfusion.  Her ANC is down a bit for sure and her LDH (and indication of cell turn over) rose substantially.  Thankfully her pain is under control.  While we have to handle her very gently given the pain movement causes her, at this time she is only on the extended release morphine tablets and hasn’t required anything additional.  She is sleeping peacefully at night and during her day-time naps.

It’s crazy how I still hold out hope, how I still think somehow this can turn around.  I guess the reality is she’s been in such desperate spots before, dark places with no seeming exit and against all odds, on quite a number of occasions she has made it out, overcome what seemed impossible.  The peaces comes quick when I am reminded that either God miraculously cures her or she dies.  Seems funny that this should bring peace but it does, because I have yielded this girl, handed her over to my Father and there is peace in no more wrestling, no more wondering.  Either way we are at home to stay.  We are never going back to Seattle to battle cancer.

We are thankful for the days given us, the hours, the nights that turn to morning.  It is perhaps the strangest of all to feel and know that we are eternal beings that making our dwelling for now in temporal homes, in vapors, as grasses and flowers that are here for but a moment and then wither and die and yet yearn for what we were meant for, a life that goes on.

Thank you to so many who have poured out your love and compassion on our family, for your passionate prayers, for your words when you feel your words fall flat and are insufficient, for your sweet faces and texts and cards.  Thank you to so many of you who have donated money to accelerate cancer research at Fred Hutchinson Cancer Research Center.  While I have respect for our devious foe, cancer, don’t get me wrong, I still intend to pursue that beast until it is slain and I greatly appreciate your support in this endeavor!  So below is a link to donate to Obliteride, and also a link for Bozeman folk who’ve expressed a desire to help us out with meals.

I should also note, we are not planning to have any sort of memorial service right away.  I do not want my time divided right now, I want to cherish these days.  There will be time later to plan how we want to mourn together and rejoice in her sweet life together.  However, knowing that such a time will come, it would be such a gift to us if you would send us a wee note of what you have loved about Allistaire, how her life and story may have had an impact in yours.  I will never forget the clarity of God’s words to me that gray December morning in 2011 and the peace that they wove in my heart – “Do not focus on all that you fear you will lose, but be expectant, be on the look out for what I will do, for the bounty I will bring out of this.”  While my hope for that bounty lies largely in heaven, it would bring such humbled joy to get a glimpse of God’s goodness here and now, in this world in this life.  So if you’d be willing to take the time, mail your notes to our address below:

14176 Kelly Canyon Rd, Bozeman, MT, 59715

Click HERE to help put an end to cancer and support me in OBLITERIDE!

Click HERE to sign up to bring a mealIMG_0463IMG_0465IMG_0467
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Come to the End

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IMG_0461IMG_0447IMG_0457The cursor blinks.  Waiting. Waiting for the words to come, to extract from the blur, to distill the thunder and wailing silence.

We are those people.  We have become strangers from even those who have known this road with us most intimately.  She is not yet gone but the memories, they flash in and burn.   Every step igniting shards of pain.  Beauty and joy, that with the awareness of their loss, pierces rather than delights.  Thoughts, uninvited barrage, come sailing past, slicing, blunt force.  I was teaching her the names of plants and she would yell out their names as we drove about – forsythia, I see forsythia, she exclaims. Red-tip Photinia gets blurted out over and over.  And there it is, a brutal mingling of what once brought joy and proclaimed life and growth is transferred into the category of no more and then the gaping expanse of emptiness where more names of plants were supposed to dwell.  But I wanted to teach her to crouch low and delight in the delicacies of moss, of tender fern, of trickling stream, to watch the light stream through trees, to stop and listen, to soak in life, to learn the secret of the bounty observation brings…

We have had rough times before, really really rough times.  There have distinct situations in which her life could have easily veered toward death, it was right there, standing at the threshold but never had it entered in.  To look at her is disorienting, to consider the severity of the situation keeps getting rejected and spit out over and over.  Dr. Cooper called in early evening.  I told him of the second guessing our decision that had already come, of the disbelief that she really is being over taken by her cancer, that there really is nothing to stop it this time.  I ask him again, are you sure, totally sure there is nothing for her, nothing?  Nothing.  There is nothing left.

This morning I thought, maybe there is something out there in the world, some new and wild way to tackle her beast, some new angle that can catch it unawares and strangle it at long last, extinguishing its mindless assault.  But no.  There are only the same grooved paths.  Therapy, primarily chemo, all to get to a transplant and she just had a transplant.  She just had THE transplant, the no holds-bar transplant, a full-conditioning volley of weaponry – if that didn’t work, there is at present nothing more under the sun that can cure.  And so the question rises, can we give her something to hold her, to simply keep her going?  But to what end?  And it’s not like this doesn’t come at its own cost.  The one possible goal was a CD123 CAR T-cell trial that is still in the works at CHOP (Children’s Hospital of Philadelphia), but it is months and months out.  And with Allistaire’s current heart function she wouldn’t qualify anyway.  And perhaps more than anything, the startling speed of this cancer’s progression makes nearly any novel therapy too late.  Her kidneys are suffering with a steadily rising creatinine level.  Her potassium and uric acid or rising due to tumor lysis.  And this rise in potassium, the unbalancing of electrolytes, could at any moment cause cardiac arrest.

Before we knew it, without intending to and without being able to yet utter the words out loud, we began to discuss what it will look like for her to die.  Does kidney failure hurt?  No, it would be peaceful.  As would her heart simply stopping, peaceful.  What a strange thing to hope for your child.  I do not want chloromas to overtake her body – they cause incredible pain and deformity.  No, it seems most compassionate to make way for some other finality.  I do not want her to bleed out.  We must keep giving her platelets.  But red blood?  It may come to the point that we simply don’t give her any more red blood and she will grow more and more tired and sleep and never wake up.

I cannot believe I am having to have this discussion.  I cannot believe the words entering my ears or coming from my tongue.  It sounds like logistics, some planning committee.  Hospice will meet you on Monday at noon.  PAC Team (Pediatric Advanced Care Team) will do this, Dr. Cooper will check on this…but there is this little girl, the nucleus of all these efforts, these considerations.  And while it all might sound callous and aloof, distant, I am confident of the sincere care for Allistaire in that room, especially that of Dr. Cooper and Dr. Bleakley, two doctors who have intimately walked this road with us, who have thought long and hard over Allistaire.  They are dear to me and I trust them.  I trust them because the are incredible brilliant people who have walked this road with families for many years, who understand the disease far, far more than most and who have known Allistaire as a real girl, not a med rec number, not a PET scan result or Flow Cytometry percentage.  And so with what very little time we have left with our girl, I will not go running after obscure options.  We have chosen to rest in the expertise of our doctors who are connected nationally and internationally with fellow physicians also working on AML.  They are a gift of great worth to us.  They honor us and honor Allistaire in their enduring work to care for children with cancer.

I am already incredibly tired.  I don’t want to leave her side.  I feel the tiny bones in her hands and the light passing across the tiny little peach-fuzz hairs on her cheeks, the long dark lashes and puffy eyelids.  I listen to her breathing and rub the warmth of her back, the delicate blades of bone.  And it all just hurts so bad.  Tonight is Friday night.  It’s always been Friday night pizza night and a movie. Sten and Solveig honor that tradition in Montana and we here in Seattle.  But tonight?  What is tonight?  Is it my last Friday night with Allistaire?  I gag at the thought. I long to throw up, to some how clamp my hands over my ears, to press my eyes closed tight and somehow make it all go away.  Can I just go back to a week ago?  Can I just undo this awful week?  Can we please not take this path?  I want to scream and scream and scream until my voice is gone.

When we sat with Allistaire on her bed and told her that we had met with the doctors and there was no medicine left, that she would die, we asked if there was anything she wanted to do.  “I want to go home,” she said.  And while we feel our resources for this situation are best here, we are taking her home for two days.  Two last days at home in Montana.  Time for the four of us to dwell in that home one last time altogether.  Time for our family to gather.  I don’t know how our hearts will bear up under it.  But we must live out each moment, each minute that amasses to become an hour, and hours days.  Yet we may really be down to days and I can’t stand the thought of it.  My body just shakes, rejecting that the child I gave life to I have to at last lay down and walk away from.

I must go to sleep.  In the morning I will pack for this brief visit home and she will get a transfusion of platelets and red blood to tide her over.

Thank you for your many messages of sorrow and love.  Thank you for your prayers.  Many of you have expressed a desire to help.  First please understand that our time with Allistaire is so short, we will really be keeping to ourselves and our immediate family, a few close friends.  At this point in time we ask that you don’t ask to come visit unless we have already communicated with you.  Please know this is no reflection on you, rather a need to be realistic with our finite time and emotional resource.

Another way to demonstrate your angst toward cancer, your sorrow over the loss of Allistaire’s fiesty bright sweet spirit in this world, your support of our family, is to give to OBLITERIDE.  I cannot tell you how brutal it was this morning to hear of amazing research underway in the lab that is no where near being ready for Allistaire.  While I rejoice at the advance of cancer research, it is too wickedly slow!  What heartbreak to know that while cures are underway, Allistaire’s body will have already ceased.  Please consider honoring Allistaire’s life by supporting me in funding cancer research at Fred Hutchinson Cancer Research Center through Obliteride.

Click HERE to donate.

“Humble yourselves, therefore, under God’s mighty hand, that he may lift you up in due time. Cast all your anxiety on him because he cares for you.

Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.

And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. To him be the power for ever and ever. Amen.” (1 Peter 5:8-11)

Blind Sided

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IMG_0434IMG_0435Blind sided.  Out of no where.  Everywhere bright sunlight, perfect blue skies, flashing radiant green leaves, bursting life.  Though my mind knew the possibility of what the scans would reveal, optimism actually seemed to fill my view and I am not prone to optimism.  I realized I had seen no change in her eye, nothing to show the march of cancer in her sinuses.  Wednesday morning I knew I would end that day knowing something profound.  And there seemed to be light on the horizon, it seemed within reach, for once a real genuine possibility that we might outrun this beast, at least for a time.  There was one dark blot.  The nurse practitioner on Tuesday had a very challenging time getting her marrow.  She poked Allistaire three times in the right hip, twice in the left and so little, so little came out.  “She bent my needle,” she told me.  As soon as I saw her I anticipated something being wrong; my hot flush validated.  Such a thing had only happened when she’d had disease.  But she couldn’t have disease in her marrow.  In an entire year of low-key chemo, she’d only had low level disease one time.  I never even thought to worry over her marrow.

Dark shadow suddenly overtook sun.  I had not heard the pounding of its horrible feet.  No awareness of its stench.  The speed with which it grabbed Allistaire…in a flash she went from her normal joyful little self, a bright sprite, a light, giddy blue eyes, a vibrancy…her face has already changed, her eyes puffy and the blue small slits full of pain.  She has done little more in the past 48 hours than sleep and call out, whimpering from pain in her arms, her legs, her head.  It hurts her to move, to shift from laying on one side to the other.  If she walks at all it is tentative and slow, pain, pain.  Gasping, gasping, mouth wide in horror, in shock, confusion.  What?  What is going on here?  My understanding fails me.  I could not comprehend the words…”there are two soft tissue masses in the left supraclavicular location…there are new hypermetabolic lymph nodes and lymph node clusters in the porta hepatis, retroperitoneum, and mesentery…there is diffuse increased FDG activity in the axial and proximal appendicular skeleton…the sinuses are clear.”  A snarling tearing, flesh from flesh.  No disease in the sinuses but, disease everywhere…in the short span of a month those cancer cells have been advancing, overtaking.  Oh my God, oh my God.

In the span of a moment, we are careening into black, the suffocating grip.  We had skirted this storm for so long, the black clouds, the sucking winds, an inertia ever threatening to draw us in and while it has always been with us, all these four years and five months, while it has remained in view, somehow, somehow we had evaded.  I called Sten…you and Solveig need to come.  Solveig arrived at 7am and Sten tonight.  We went to SCCA for Allistaire’s regularly scheduled Thursday morning labs.  When we left six hours later, as I cradled Allistaire’s great 20.7 kg of flesh, and was turning to go, I looked at Dawn, our long time nurse, the words caught in horror, “I don’t know if we’ll come back here…”  Oh God.  Oh God.

How could light and hope be extinguished in so short a time?  I began the day knowing there was probably nothing we could do for Allistaire; that there was probably no treatment that could cure her.  But still my heart clung to the hope that there might be something to hold her, to get her further down the road that somehow her life might intersect some new wonder of research, some new therapy that could somehow, somehow stop this ravaging.  I thought my challenge would be taking the girls to Disney Land and not crying the entire time.  But there was Jamie, the fellow.  “Her marrow has 9.5% disease.”  No wonder she’s in pain.  Her bones are filling with cancer.  In the course of time I learned that her chimerism had changed, now only 85% Sten and about 15% Allistaire, about 15% cancer.  How could this be? A week ago I was told her chimerism were 100% donor.  I could have never imagined this speed.  Her labs show rising uric acid and potassium, evidence of tumor lysis, of rapid cell turn over, of the multiplication of millions of the most fearsome of cancer cells; cancer cells that had some how thwarted the assaults of a nuclear blast worth of radiation, of over 25 rounds of chemo, genetically modified T-cells and the mis-matched cells of another.

All of sudden I realized…the good has already passed.  I have most likely already taken her to the park for the last time.  When was that?  When was the last time I followed behind her on her bike on the Burke Gilman?  When was the last time I tickled her until she cried out for me to stop, never wanting me to stop.  When did I last see her face look like her face, hear her unfettered laugh.  I feel myself going down, my own flesh ripped from bone and tendon, sinews tearing.  Agony.  How can this be?  How?  How could I have already lost so much?  But I didn’t even know!!!! I didn’t even know it was happening.  I thought there would be time, time.  And just like that – everything has changed.  Every action has always been in orientation to her survival, to her life going on, to sustaining.  And now it’s all been swept away.  It’s already gone.

I looked at the toilet seat covers.  I noted the handle to the door that I would never have touched with my bare hand.  I thought about her reading book laying on the table at Ron Don.  She’d come so far.  She was doing so well learning to read.  And now it was gone.  When was the last time she sounded out a word, read her short little stories?  She never even got to go back to school after she was discharged from the hospital because of her cold.  I won’t have to figure out how to home school her.  It won’t matter if other children in our town are not vaccinated.  They can no longer but her in harms way.  I won’t have to mourn that she can’t go in the water at Cliff Lake.  She won’t be there.  She won’t be there for my birthday.  She won’t be there for Obliteride.  She said to me this afternoon, she said, “I wish Obliteride was happening right now.  Why sweet girl?  Because there’s no medicine left for me.  And then the doctors would have money to find something for me.”  Aaaaaahhhhhhhhhh!  The flesh of my face contorts and my heart beats hard.  How will I get on my bike?  How will I ride those miles?  How can I not get on my bike?  How can I not ride and ride and ride and ride and never stop, never stop asking for more.  More.  We need more!

Dawn showed me the med list, wanting to know if there were any meds I wanted to stop giving her.  Because suddenly we don’t have the long view any more.  Suddenly everything I have done as a parent to push her, to care for her as a person who will grow into an adult, it all falls flat, out of place.  It no longer makes sense.  I hesitated.  How could I say no to any of those meds?  How can I yield?  How can I yield?  How can I hand her over?  But what does it look like to love her now?  I have for so, so long fought for her, defended her with all my might, been attentive to ever last detail.  How do I just walk away.  How do I just stand with arms at my sides at let it come for her?  We still haven’t met with the doctors to come up with a plan, but as the day progressed it became more and more clear that there is probably nothing to be done but make her comfortable.  I asked Dr. Wolfrey, what do you think?  I know you can’t tell me how long, I know you can’t predict, but you’ve been here a long time, you’ve seen a lot, what do you think?  She agreed that it had taken everyone by surprise, the change had come out of nowhere, there was no hint of its onslaught.  But given the rapid progression, she said probably no more than a month.  Maybe two weeks.  Maybe one.

Incomprehensible.  I literally don’t know how to comprehend.  I feel the immensity of this is more than my flesh knows how to allow in, to take into myself.  Though I have intentionally looked death in the eye over and over, have never turned away from its black looming form, despite holding the cold hands of my friends children, it remains a reality disparate, utterly apart from all I have known of this child who has only ever burst with life.

What I can tell you is that those close to me, dear to me, those whose beloveds have died, they long to be reunited with them.  And those that know Christ – their yearning has a specificity, a particular quality and dimension, a faint outline, their eyes keenly fixed on the shadow of what is promised, they have a yearning unlike anything they had previously known that draws them to the Lord, to call out with groaning for Christ to return, a desperation to leave this life and enter the next.  Mental assent to the concept of death and disease and sin is not enough.  One most know the gnawing of disease, the gaping hole of death, the ugly betrayal of sin in order to loosen the grip on this life, this world.

Ingrid Lyne’s sawed off head and foot were found Saturday afternoon in a recycling bin.  She was savagely murdered by the man she was dating.  She was a nurse at Swedish Hospital.  She was forty years old and the mother of three young girls.

On the same day that Ingrid was found, my friend’s brother-in-law jumped off an overpass in California.  He leaves behind his wife and sons.

A woman in our town suffering from postpartum psychosis, shot her husband in the back of the head, then her sixth month old baby before calling 911 and then shooting herself.

My friends have a box of all that remains of their little girls, ashes.

My sister-in-law grieves Jens’ body broken at the bottom of cliffs.

I have yelled ugly, belittling words at my children, the very children of my womb, the children I love.  I have harmed my husband and not made safe space for him, I have been guilty of immense selfishness and materialism and arrogance and gluttony and coveting.

My six year old little girl likely swept away, never to admire her hilarity again, to see the sweet compassion in her eyes, to rub her back at bed time, blow kisses…

And you ask me how I can groan for another life, for another world, for an altogether different sort of life?  How can I not?  How can I not scream with every raging cell of my body that children should not die, that depression should not destroy, that sin should not ravage?

The brutal unending brokenness of this life, this creation causes my eyes to rise, to lift up, to fix my gaze, my hopes on God.  Apart from hope of another world, another life, despair might likely dominate, or numbness or distraction.  God declares this of the life to come, “Now the dwelling of God is with men, and He will live with them.  They will be His people, and God Himself will be with them and be their God. He will wipe every tear from their eyes.  There will be no more death or mourning or crying or pain for the old older of things has passed away.”  (Revelation 21:3)  This hope enables my to look full into the face of this agony, this dark, impending death, horrific violence, utter despair, and see the promise of more, of different, of other and my longing grows.

The bulk of my hope lies in a world yet unseen, in a reality promised but not yet experienced.  The irony is that this assurance of God fulfilling all His promises, of redeeming all our sorrows, of all the days of my life being of purpose and enveloped in a vast and beautiful plan, of putting away death and sin for eternity, this subsequent loosened grip on this life, it frees me up, it gives me buoyancy to more fully dwell here, now, intently, without having to turn away.  I don’t value this world and this life less because my eyes are fixed on the world to come.  No, I am freed up to relish and delight and claim beauty and good where ever it is to be found in this life and in turn to know that it is just a whisper of what is to come.

It is mystery and paradox but my very love of sunlight, of craggy rock and star scattered night, of cool scent of sage, of birdsong, of cytoplasm and nucleotides and whirling atoms, of ocean and whale and storm and tectonic plate, of magnetic pole and bursting suns and waves of the electromagnetic spectrum – they all call out – they all declare and sing and sing of God and I treasure them all and I am giddy before them and they point endlessly to the might and glory of my God. I don’t love the earth less because of my belief in God – I love it more, more, more for it is all His, it is all the expression of His wonder.  And if this is how I may treasure that which does not have spirit, how much more my fellow beings, crafted of but dust, but made alive by the breath of God?

Time is short and I must go.  My words fall short as I try to grasp for words to put some beginnings of dimension and color to this mystery – this agonizing that comes from the thought that we may really soon lose Allistaire and yet – this brutality is all interwoven, caught up in realities far vaster, hopes that sustain the heart that tastes death.

The day has begun and Allistaire is already calling out in pain, pain in her legs and her first dose of morphine.  I have already emailed Dr. Cooper to ask about another CD33 targeting drug (a sort of next generation Mylotarg drug) in clinical trial for adults – could it be an option for Allistaire?  Could we get it on a compassionate use basis?  And you know what – that drug – it comes from a sea hare, from the symbiotic relationship it has with the algae it eats, from some molecule that is formed in its gut.  So you see, even in the midst of the most brutal ravaging, there He is, there is God not waiting to give us life only in the life to come, but in the most wondrous of ways, declaring, I am here!  Look how I love you!  Look how I have gone before you and provided for you.  Look how I have compassion on your suffering.  Look low here and now and behold that I am God – be in awe – see what I have made and if you think this is good, well just wait and see, this is only a tiny smattering of the glory to come.  Come Lord come!!!!!

We meet with Dr. Cooper and Dr. Bleakley at 11am today.

 

Range

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IMG_0335A time between times.  A place between places.  The Bridgers fill the expanse, stretching miles and miles wide before me, foothills reaching out toward the greening valley floor, ridges and draws white with snow echoing lazy clouds above in that bluebird sky.

I’ve already hugged and kissed Sten and Solveig goodbye.  I have yet to return to Allistaire, to take in her giggling little voice, to feel the smooth warmth of her still bald head.

Six days at home.  A home that is home and yet stranger, a home that holds my heart, that taunts with its wonders of ordinary life, pulling the warm clothes from the dryer, matching socks for Sten and Solveig, clothes that encircle the bodies of the other half of my family.  Washing dishes looking out the window at the Spanish Peaks, passing the coats in the mud room where wood smoke still clings its heady scent.  Waking to the rush of wind in trees, bird song and the looming form of Sten still asleep next to me.  Lying down at the end of day with the glitter of stars, from horizon to horizon, faint and bright, haze of star cluster, fiery white bright of planet.  Hills turning from doe to fresh green, drawing the deer in dozens, their forms scattered on the grassy slopes morning and evening, their eyes luminous in darkness of night.  Waving to my mother-in-law as I drive down Bridger Canyon Road and she drives up.  Seeing Jess on the sidewalk with my little nephew, Per, and yes, I should like very much to walk over to the Emerson with you two to see your friend Jen’s new shop.  Hiking the “M” with Hope, watching the pink swath of morning light overtake shadow of mountain and consume the valley with brilliance.  Looking into Jo’s eyes swimming with tears, heaving sorrow for one entire year gone without her beloved, Jens fallen on Beehive Basin a day shy of a year ago.  Hugging Solveig’s glossy brown hair to my chest, joyful for days at home with her, mourning that I must leave her once again.

Twenty-five of thirty-six months spent away from home.  Not only must I leave yet again, but what I’m returning to looms up like oppressive shadows, a chill rushing in, clouds blocking sunlight.  On Tuesday, April 12th, Allistaire will once again go through numerous tests looking for her cancer.  On Day+91 Post Transplant Allistaire will have a PET/CT, Brain MRI, high-resolution chest CT, bone marrow biopsy, lumbar puncture and skin biopsy (to check for GVHD).  The bone marrow will be tested by Flow Cytometry, Cytogenetics, Pathology and for Chimerisms (percentage of donor vs. patient/Allistaire’s old diseased marrow).  In her last round of testing, I was originally told all nine of nine tests detected NO cancer.  A week later, a second review of the PET/CT and Brain MRI concluded that there appeared to be some tissue changes in the area of her right sinus maxillary exactly where there had been disease before.  The changes were not significant enough to allow the area to be biopsied, but could either represent leukemia or her cold/possible sinus infection.  On the 12th, the images will reveal the path ahead, toward health, or ongoing battle with sickness.

There have always only ever been two outcomes.  Either she lives or she dies.  Nothing has really changed and yet, I keep smacking up against the brutality of her possible death.  There seems to be no let up, no lull that does not last but a moment.  When Dr. Burrows called to relay that the radiologists did not think it was feasible to biopsy the spot in her sinuses, I tentatively ventured to ask the looming question, what, what do we do if it’s disease?  That very day I had gone to our Financial Counselor at the hospital to get some updated stats.  To date Allistaire has lived 515 inpatient days in the hospital, almost 25% of her life cooped up within those walls fighting for her life.  Sixty percent of her life fighting her nemesis.  This battle has thus far cost $9,625,000.  Nearly 10 million dollars have been expended to destroy a cell, one rogue screwed up cell that threatens to mindlessly swallow her alive.  The very best of all that humanity has to offer has been brought to bear against this disease.  No expense spared, to weapon denied.  And yet…it still may not be enough.

With hesitation I asked about more treatment, pulling that massive number out into the light for Dr. Burrows to face.  She tells me their focus is not on cost but on quality of life, they consider Allistaire’s quality of life and what may be able to extend that life.  She went onto tell me how the world of oncology has changed in the time since she was a fellow, how in those days no one was ever offered a second bone marrow transplant.  If you relapsed after transplant, there was nothing left, you died.  Then in time they began second transplants, but then never if there were circulating peripheral blasts.  But as research allowed for less toxic transplants and greater advances in supportive care, more and more treatment options became possible because patients could endure what was being thrown at them.  She told me that even as short as a year ago a patient like Allistaire with extra-medulllary disease (chloromas), would most likely not have been offered a transplant.  She told me that in all honesty, to be completely blunt, she did not think that Allistaire would survive her transplant.  She thought surely she would die.  As she sat after dictating Allistaire’s Arrival Conference for transplant, she wondered if they were crazy to offer this transplant to Allistaire, what were they doing to her?

“Jai, she’s defied the odds over and over again.”  Yes she has.  She had no complications in transplant with the exception of a small amount of mucositus in her bottom.  She continued to eat, drink and take her meds throughout.  Her heart held, her lungs did not bleed, her liver remained healthy with no VOD, she had no brain hemorrhage, she did not even ever need TPN.  She discharged in record time, in only 22 days, the shortest escape being about 19 days.  So, what will we do if it’s disease?  The answer is unclear, the way forward a fog.  I requested we sequence the genome of her cancer to get some more possible ideas of how we might target her disease.  The answer arrived a week later, that yes, Soheil had approved deep sequencing to be conducted by Foundation One, and specifically their assay, Foundation One Heme.  Here is a bit of explanation from their website:

“FoundationOne Heme is a fully informative genomic profile for hematologic cancers (leukemia, lymphoma and myeloma) and sarcomas, designed to provide physicians with clinically actionable information to guide treatment options for patients based on the genomic profile of their cancer. It is Foundation Medicine’s second commercially available targeted sequencing assay.

FoundationOne Heme uses comprehensive, clinical grade next-generation sequencing (NGS) to assess routine cancer specimens for all genes that are currently known to be somatically altered and unambiguous drivers of oncogenesis in hematologic malignancies and sarcomas. FoundationOne Heme simultaneously detects all classes of genomic alterations, including base pair substitutions, insertions and deletions, copy number alterations and select gene rearrangements in 405 cancer-related genes. In addition to DNA sequencing, FoundationOne Heme employs RNA sequencing across 265 genes to capture a broad range of gene fusions, a type of alteration that is a common driver of hematologic cancers and sarcomas.”

This genomic information on Allistaire’s cancer cells are then cross-matched with clinical trials and possible targeting drugs; all in an attempt to expand her options for treatment.

The sun is lowering in the sky, rays of light skimming horizontal across rock, illuminating the craggy face of Ross Peak.  As my eyes rest on the timeless grandeur and power of rock and light, my mind hones in on these words, “The Lord commanded and it stood fast.”  Psalm 33:9  “This far you may come and no farther, here is where your proud waves halt.” Job 38:11  My life has felt unfathomably tenuous, the thread frayed about to split and everything scattering.  But this is illusion, this is sensation, this is seeming not actuality, this is seeing through eyes of flesh.  And while this fight dwells largely in truest flesh, it is bound to and enveloped in the voice of God, the voice that calls out all the starry host one by one, each by name.  Because of his great power and mighty strength, not one of them is missing.  God my God is God over all, over every star and wave and cell and molecule and whirring atom.  My life is anything but tenuous, it is secure in the Lord, and it is He who determines its boundaries, its dimensions, its qualities of light and color, of texture and fragrance.  He commanded and IT STOOD FAST!  Yes, yes I am absolutely terrified that Allistaire might still have cancer and I know of nothing left to rescue my girl and it makes me feel like my flesh will explode into a million ragged bloody pieces if this beast takes her down.  Being home in the wonder of this beauty and ordinary makes me long to finish this fight all the more, makes me yearn for wholeness of family and relationships, of rhythms of days and seasons.  The changing light on the Bridgers , shadows lengthening, colors of light intensifying – it all taunts and calls to me, the freshness of cool morning air, grasses waving in wind.  But I gather it all up, a heap of longing and I fall down before my Father, handing it over, entrusting, resting.  You are God.  That is what it comes down.  He is God and I will choose over and over and over to take His hand, knowing He holds all the world and its goings ons there.

What results come from Tuesday’s scans…they come from the hand of God, and by the power of His Spirit at work in me, that same power that raised Christ from the dead, I know, come what may He will hold me up.  He will make my heart sing.

Thank you so much to those who have already tangibly supported our fight for Allistaire’s life in giving to support me in Obliteride. If your heart aches with desire for there to be another open door for Allistaire, for your own battle against cancer, for the beloved flesh of your mom, your brother, your dear friend, please consider supporting cancer research at Fred Hutchinson Cancer Research Center.  One-hundred percent of funds donated to Obliteride go directly to accelerate cancer research.

Click HERE to donate to OBLITERIDE and save more lives FASTER!!!IMG_0285 IMG_0298 IMG_0312 IMG_0316 IMG_0323 IMG_0327 IMG_0336 IMG_0349 IMG_0353 IMG_0354 IMG_0360 IMG_0373 IMG_0375 IMG_0382 IMG_0386 IMG_0388 IMG_0392 IMG_0399 IMG_0402 IMG_0403 IMG_0414

 

Longing

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I was watching a movie…a man trudging through the snow, days and days, months of journeying, comes to the top of a ridge. Out before him unfolds an expanse of evergreen covered hills and mountains with snow, clouds settled in the low lands like a thin veil of blue. Everything in my heart heaved one groaned word, “home.” Oh the longing to go home, it pulls deep. The longing to at long last lay down the battle, to be at rest, to no longer strain, to be in the presence of those who love you, to feel safe, to cease the striving, to release, for all to be as it should be.

I hardly knew it was Easter. I mean the stores made it clear that it was somewhere on the horizon, but suddenly it was upon me, Sunday was coming. And I push aside all the eggs and the bunnies and candy and chicks like so much underbrush, hacking with machete to get where I’m going, to get home. To find rest. How timely that it is Easter for I am in ever so much need of rest. I weary. My heart faints. My face throbs from pain at the relentless tears. My voice feeble, oh Father how I long, long to curl up beside you, to have your mighty arm encircle me. I long for you, for that rest that Easter makes possible. And you stretch out your hand to me and invite me into that rest now. Come now, enter in, abide in Me as I abide in you.

We are in the garden and the serpent seeks to whisper disbelief, to suggest You Father are not really so good, are not really so kind, but cruel, a depriver of what I really need. And I see you there my Jesus, agonizing over what the Father has asked of You, asking if there be another way, oh let this cup pass, let it pass God! And when the answer comes, that No, No this is the only way, You yield. You say Yes to the Father and you lay down Your life. Your greatest work was to rest, rest in the Father, yield to Him.

Oh Christ, our great High Priest, our compassionate intercessor, hold up my heart. Enable me by your Spirit to yield, to yield, to say Yes Lord, Yes, You are good and I will trust in You, I will rest in Your holiness. I will take Your hand and follow wherever You will lead, even if into blackest of night. I lay down my life and it truly feels as if my lifeblood flows out. I am faint, so weak. But will I love as You have loved? Will I lay down my life, my vision for what my days on this earth were to look like, will I say Yes to whatever you deem best to love others?  Oh Father, you see them, you see those dear to me there…across the cavern, I hear their voices as though muddled through water or glass, I reach out but they are too far, so, so far. Will I say Yes Lord, she is Yours, and Yours to take? Am I willing to cross over into that dark, into that wilderness, that wasteland? I have always known this, the stark truth of it always, always looming in the periphery…You call some of Your children to go all the way down that dark road. You draw them into the black. Because only there can You demonstrate, not in word, but in reality, that I will find You in that darkness and You are the God that turns darkness into light.

Lord, I am far too small to say what is right, what is best. I know only that my whole heart longs for You. And I do say Yes to You, I will take Your hand and walk into the black because ultimately I do not despair. I know what happened, what we remember on Easter, I know You said Yes to the Father, You yielded to the Father and You were crucified for it. You were put to death and swallowed into the black. And yet, You rose, You overcame the power of sin and death and the tomb was empty and everything about those three days has everything to do with this day, and all the brutal days behind and the ones to come.

Hear my cry to You oh my God! Many recoil at this faith they find so absurd, so utterly foolish, so offensive. I know only that I love You my God. I have tasted of You and I can never walk away. Hold me tight. Gouge out my heart if You must, but Spirit, teach me the truth of these words of Jesus, “If any man will come after me, let him deny himself, and take up his cross, and follow me. For whosoever will save his life shall lose it; and whosoever will lose his life for my sake shall find it.” You are my hope, my home. You are my resting place, my Sabbath rest. It is only in You and through You that I have life and all will be made right. It is only because of You I have any hope of a gentle and quiet spirit, a spirit gentle and kind because I have been forgiven so much and a spirit quiet because in You it is finished, You sit at the Father’s right hand. All Your promises are Yes, and Your will be done on earth as it is in heaven.

I thought this afternoon I would sit down to write of nine tests showing no evidence of cancer in Allistaire, for in all nine I had word that every attempt to find her leukemia came up with nothing. A brain MRI, a PET/CT, a LP (Lumbar Puncture), ultrasound, peripheral blood chimerism and whole marrow chimerism, flow cytometry, pathology and cytogenetics – one by one the results trickled in over the course of a week. I would not claim victory until every last one came through. And even then, when my sister-in-law asked me if I was excited, I said No. No. We have had clear results before and the cancer has always been there, ever lurking, ever seeking to devour and destroy. I am thankful, of course. I am glad. I can breathe a bit easier, but at any moment, any moment, it could all change again.

I had hoped this transplant would at least give Allistaire time. Time. Time for what? Time for research to catch up with the complexity of these cancer cells that seem ever able to evade, time to design a full-proof weapon, time to make it down the road far enough for some new therapy to intervene before she be swallowed alive by this beast. I had started to dare look down the road, to think about the actual possibility of going home. Maybe she would be alright. Maybe it would actually make sense that I was teaching her to read. Maybe she would live long enough for literacy to matter. She said in the car this morning on the way to clinic, “I wonder if I’ll have babies.” Pain squeezed around my heart. “You probably won’t be able to have babies, sweet girl.” “Why not?” came the sweet voice from the back of the car. “The part of you that makes babies was too badly hurt by your chemo. But you could probably adopt babies.” Her face lit up. She liked the idea of that. And I told her, that if she lived long enough to be old enough to be a mom, that would be amazing enough, she would probably be okay with not being able to grow babies in her own body.

Our schedule only required we come in for her second set of labs for the week. We sat on the bench just beyond the elevators there on the 6th Floor at SCCA, the Bone Marrow Transplant floor. We had checked in and were settling into the wait and to begin our breakfast when Erin the P.A. said that Dr. Burrows wanted to talk to me about her PET/CT results. Instant panic. Instant terror, a swallowing, the world turning black, cold down the neck, drowning, it’s coming, it’s coming, I know what’s coming, I’m going down and like that every hope was snapped off like a dry twig.

We were taken to the conference room and I handed Allistaire my phone with the sound turned off, and she turned to Toca Boca Hair Salon and proceeded to spray the girl’s hair pink and purple and green. And Dr. Burrows came in and looked at my face and asked how I was and I stood there with a great blade struck through my torso, the blood already staining my shirt and the beads of sweat on my forehead and the color gone from my face. And she went onto explain that the while the brain MRI had originally been read as everything being clear, because the PET/CT showed an area of FDG brightness of 4.0 (normal being 3.0 or lower) in the exact area that her chloromas had been, this prompted a second group review of her past and present scans. In short, there are changes in the tissues in her right sinuses, changes that may be because of her significant cold, due to the human metapneumovirus which has yielded phenomenal amounts of snot for the past month, or it could be disease. It could be leukemia. There is no definitive way to tell at this point. We’ll have to rescan in a month. We’ll look again when her cold has cleared and the tissues in her sinuses have had time to return to normal if it really is only the impact of this virus.

Yesterday I woke several times in the night. Ava. Ava. Ava was always there. Immediately. Her name was the first thought formed, resounding, pounding. Then next there was Esther, her mom, my friend, my sister in Christ. Esther. My friend flailing in the water, struggling to catch her breath as the relentless waves threaten to swamp her. And we’ve been texting and she tells me it looks like the tumors are coming back and she cries out into the black, looking for a way through the thick dark, looking for a ray of light to get her daughter through to the other side of this cancer, this ravager of her flesh. And I have no life line for Ava’s flesh and I pray to God that He would work through Dr. Cooper. But to Esther I speak our Father’s promises, I ask His Spirit to speak His words of encouragement, of peace, courage my sister, courage! The very same power that the Spirit exerted to raise Christ from the dead is at work in us!  If even the worst comes to us, our Father will carry us, bind up our wounds.

It is strange to dwell in two worlds, to have your heart so firmly planted in both, the temporal and the eternal.  We’re sitting on the $40 Ikea rug putting together her Elves Lego set she got for her birthday.  I love to watch Allistaire’s face.  To catch the light skimming across the delicate peach fuzz of her deliciously adorable cheek, the perfect little swoop of her nose, her long thick lashes growing back in, the delight in her eyes as she tells me a story, the movement of her lips with voice just so sweet.  I watch her two small hands struggle to get the Lego pieces to fit together just right.  To know her is to know a hundred-thousand million delights.  The thought of losing her, of having her absence an ever-present ache and sting, oh how can we bear up under such sorrow?  How can some stupid little cells take that all away?  Is there really, really nothing we can do to get rid of them?  I think of the life we could have had.  Six years old and what has her life looked like?  And who might she be in the world if she just had a chance to live?

Today is Good Friday, a name that still doesn’t sit right.  I don’t know what would be a better name, maybe Brutal, Wretched, Agonizing Friday?  I can’t stand it when people try to comfort me and brush aside all the pain and the sorrow and focus only on the good.  I know they’re just trying to help, desperate to alleviate some of the sadness.  But this is real.  This is not a movie.  This is not a story.  This is my child.  This is my life.  This is my flesh bleeding out.  And I actually have to live every day looking at my beautiful child’s face knowing tumors may be growing even now, to one day deform and strangle and leave a gaping, ragged hole in my life.  And Christ really did die an agonizing death on a cross because I really have sinned, sinned long and sinned hideously and shaken my little fist at God so many times, spitting on His name.  Those ten commandments – I’ve broken every single one.  And I don’t even have to look out in the world, to Belgium or Trump or some slum in India with little children begging for food, to know just how broken this world is.  I live it everyday in my impatience and arrogance, my selfishness and covetousness, my anger and laziness.  I live it everyday as I scan the details of Allistaire’s labs, and MRI reports and research abstracts and Facebook posts about another friend’s child whose tumors are spreading and he’s losing control of his limbs and his body that was headed toward manhood is growing weaker and weaker.

Good Friday?  It is only good because we know what happened on Sunday and Sunday could never be had we not first lived through Friday.  Easter has everything to do with cancer and it has everything to do with my weariness over having to ask Allistaire for forgiveness again because I tore into her with my words and did not treat her with gentleness and patience.  I wake up from a restless night, neck and shoulders aching, still tired.  And the memory of all the sorrows that I laid down with at night come slamming back into my consciousness with the weak morning light.  But it’s Good Friday and I know because of what happened on that hillside in Jerusalem a few thousand years ago that is not just a story, that His mercies are new this morning.  His manna is here for me to gather today.  He will be faithful to carry me today and every morning I wake up to another day in this life.  Christ Jesus said Yes to the Father and He laid down His life, and it was through this very act that He overcame the power of sin and death.  He found His life because He laid it down before the Father.  So as this day dawns I know death will not have the last word.  My sin will not have the last word.  All these sorrows will be redeemed.  Life will rise up and all our tears will be wiped away.

“Do you not know that all of us who have been baptized into Christ Jesus were baptized into his death?  Therefore we have been buried with him by baptism into death, so that, just as Christ was raised from the dead by the glory of the Father, so we too might walk in newness of life.  For if we have been united with him in a death like his, we will certainly be united with him in a resurrection like his.  We know that our old self was crucified with him so that the body of sin might be destroyed, and we might no longer be enslaved to sin.  For whoever has died is freed from sin.  But if we have died with Christ, we believe that we will also live with him.  We know that Christ, being raised from the dead, will never die again; death no longer has dominion over him.  The death he died, he died to sin, once for all; but the life he lives, he lives to God.  So you also must consider yourselves dead to sin and alive to God in Christ Jesus.” Romans 6:3-11IMG_9246IMG_0257IMG_0255IMG_0247IMG_0239IMG_0238IMG_0230IMG_0229IMG_0224IMG_0219IMG_0216IMG_0215IMG_0131IMG_0183IMG_0188IMG_0193IMG_0199IMG_0211IMG_0119IMG_0115IMG_0110BTIZ2720IMG_9936IMG_0117OMSP2016FICC3705CFNU6254IMG_9925IMG_9930IMG_0041IMG_0040IMG_9905IMG_9902PNPW5709SLGX7998MIOJ4337IMG_9890WBAZ5922NHPA6213APVN6736QVBZ7497ENJE7790IMG_0034FullSizeRender-51FullSizeRender-50IMG_8960IMG_0025IMG_0023IMG_0021IMG_0020IMG_0018IMG_2824

Stirrings

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IMG_2802 IMG_2798 IMG_2794 IMG_2791IMG_2811I grew up in a land of unfoldings.  A land where one must bend low, look now, another unfurling.  A land of delicate magic, intricate.  Stepping over branches slick, footsteps quiet on the soft underfloor of forest.  Ferns unwinding, their beings all folded up tight in complex arrangement, arching their backs, rising toward the light filtering down to them from high in the silhouettes of tree tops.  Little ferns with leaves paper-thin, bright green in direct light, countless shapes repeating.  Fuzzy juicy stalks and delicate sleek black ones.  Mosses creeping, covering like downy shawl a glorious, vigorous green.  Everywhere lush.  I recall making a fern fort once.  Ripping up scores of Lady Ferns, weaving them into walls and overhanging.  I lay down upon the mossy floor and looked up through that scattered light, the greens bright like stained glass.  Ferns and moss, resplendent greens of life unrelenting, delicate yet most resilient.  Two gifts of this earth instantly inciting glee in my heart.  Like Thoreau, I repeat, “I think my own soul must be a bright invisible green.”

And birds.  Oh the birds.  Fat breasted robins calling in the early morning when light has only begun to seep.  Chatterings, bushes alive with tiny throbbing birds.  Evening calls as day calms toward night.  The days are lengthening.  Crocuses and daffodils thrust up from the dirt.  Cherry blossoms pink, forsythia and azalea.  Tiny white clusters like thick stars on the limbs of apple trees.  This is something Washington has that our home in Montana never will.  Spring.  Winter turns almost suddenly to summer in Montana and doesn’t come until June.  But here, in this land, the drear of February, a time when the weariness of winter starts to become intolerable, it catches you off guard…there, did you see it?  Stirrings.  Hints that winter will not forever stake its claim.  In the cold of ground and the rigidness of trees and branches, life still courses.  Somehow what looked vacant, dead, unmovable, is everything to the contrary.  Nay, there is an overcoming, some inner working unseen to my eyes, yet with such vigor as to burst through rock and soil and press out of wood and limb.  A draw from distant lands, a call for the birds to return.

Spring is as sure as anything in this life.  We know it deep in our flesh, our own veins course with anticipation.  An inclining.  An unconscious arching toward light, a yearning to feel warmth of light and freshness of breeze.  Some mineral tang on the tongue that declares life never ceases, though all appears to disagree.  That’s what we’re banking on, that is what moves us through our days.  A hope.  Hope.  Such an overused word.  But no, no.  It is not merely some ancient knowledge that the earth will continue spinning on its axis, marking countless days and nights and a relentless orbit that will always swing back toward sun.  No.  Hope is unique to our humanity.  Hope looks about and not only says, but proclaims, what I see now is not all that there is, there may indeed be more and different.  Hope looks forward.  Hope is the very essence of endurance.

There are stirrings in the woods, stirrings of song and light and delicate unfurlings that press against the dark and the cold.  It makes me giddy.  Giddy that death will never ultimately overcome.  Giddy that the world is arcing in its orbit toward the sun.  Giddy that one day the land will be bursting with life and the sun will rule the day and their will be an unstoppable flourishing.  Abundance will mark life.  No longer scarcity.  No longer mere grasps at survival.  No longer decay and death.  The greens are unfurling.  The birds have begun to call out to the morning.  Spring is that tangible bright expression of the hope that courses through me.

And I have much to be giddy about.  Hope abounds.

The land is wakening and it lightens the step and everywhere there is more to smile about.  And Allistaire is doing just so surprisingly well.  Dr. Sohel Meshinchi, our current BMT (Bone Marrow Transplant) clinic attending doctor, has ended our last several clinic visits with the statement, “I have no concerns.”  This is like balm to the feverish forehead of a cancer parent.  Her labs continue to look great and even improve.  Her red blood and platelets are recovering, with platelet transfusions being spread out to one or two a week, whereas they had been every day to every-other day.  Robin, our clinic nurse the other day said with glee, “Look Jai, look here at her ANC (Absolute Neutrophil Count), it’s normal.”  She looked at me with shining eyes.  Normal.  2,612  What an amazing number.  What a wonder?!  Normal.  Imagine that!!!!  Her liver function numbers have improved substantially and are only slightly high, her kidneys continue to do well and her BNP (measure of heart distress) was down to 119 the other day, a gorgeously low lab value.  She continues to be CMV negative (Cytomegalovirus which can reactivate).  Her weight is good as her appetite improves and taste buds return to normal.  She has begun to eat salad, and even declares its tasty with the exception of the one half of one grape tomato I force upon her which causes her to dramatically grimace and gag every single time.  She skips and paints and rides her bike and sings really loud with her headphones on.

Today marks Day+43 post transplant.  We are still very early in this very long process.  My brother asked me a while back, when we would know if the transplant was successful.  Success is multi-pronged in this situation.  The first mark of success is that she has survived the actual transplant process itself.  Her body and specifically, her heart was not overwhelmed by the cytokine storm of the infusion of the donor cells, nor the hyper-hydration necessary with the chemo.  The cyclophosphamide did not cause the slim but terrifyingly possible acute heart damage.  Her lungs did not bleed nor did she have the brain damage possible with MMF.  Her liver remained healthy despite the increased risk of VOD brought on by several rounds of Mylotarg.  Her graft did not fail, rather Sten’s cells have latched on forcefully resulting in 100% chimerisms.  Her marrow is clear of detectable cancer both by Flow Cytometry and cytogenetics.  Thus far, her transplant has been a success.  It is a beautiful surprise.  Allistaire’s golden birthday is coming up soon and honestly, as I look back, this is the fifth birthday that I never knew would come and had much reason to think it never would.  It is the fifth time we have had cause to celebrate life that might not have been, life that has been relentlessly hounded by cancer.  But hope has continued to mark our days, and now years.

This next phase of transplant continues to be about making sure the cancer is kept away and about being on guard for GVHD (Graft Versus Host Disease).  Every two weeks she gets a LP (Lumbar Puncture) in which Intrathecal Chemo is given and a sample is withdrawn to check for disease.  This means chemo is placed directly into her spinal fluid as it can be a “sanctuary for leukemia,” given the blood/brain barrier that does not otherwise allow chemotherapy to pass through.  While CNS (Central Nervous System) relapse is less common in AML (Acute Myeloid Leukemia) than in ALL (Acute Lymphoblastic Leukemia), the more common form of childhood leukemia, it is still a danger.  She will get 5 LPs in all post-transplant.  So far, her LPs have not detected any cancer in the spinal fluid.  She will also be getting a BMA (Bone Marrow Aspirate), and PET/CT on March 15th.  Typically BMAs are done post transplant only on Day+28 and Day+80.  But for high risk patients they include another intermediate BMA.  March 15th will be her first PET/CT since November and before her last round of chemo pre-transplant.  At that time, her body was clear of chloromas with the exception of those in her sinuses, which had reduced in bulk from the previous round of chemo but were still present along with one new small chloroma.  While her sinuses received 5 fractions of focal radiation and her body was barraged with TBI (Total Body Irradiation) and systemic chemo (fludarabine and cyclophosphamide), I am still nervous about this upcoming scan.  Her cancer has defied countless assaults, its tenacity awe-inspiring and terror invoking.

At this point, there is no evidence of her disease.  I rejoice at this and simultaneously remain on high alert, knowing “no evidence of disease,” in no way means we can confidently say there is no disease.  The other significant issue the doctors and I are ever watchful of is GVHD (Graft Versus Host Disease). GVHD is when the donor cells attack the host (Allistaire), most commonly in the skin, gut and liver.  GVHD is always a concern in bone marrow transplants but especially so in Allistaire’s case because of the much greater mismatch to Sten.  Common symptoms of GVHD include skin rashes, tummy pain which can cause the patient to stop eating, diarrhea, and elevated LFTs (Liver Function Tests).  There is a strange love-hate dance with GVHD.  GVHD can severely impact quality of life and even cause death.  What starts out small can suddenly turn into “rip-roaring GVHD,” so caution and response is necessary.  But the treatment for GVHD has its own consequences.  Immune suppressants such as prednisone and cyclosporine are given to tamp down the aggravated response of the T-cells.  However, not only can these drugs have devastating effects on bones and joints (it’s not uncommon for teenagers to get hip and knee replacements), but the rest of the patient’s immune system is suppressed along with the T-cells causing the GVHD.  This means the body’s ability to fight infection is radically diminished, again sometimes resulting in death from infection.  In addition to the complications to be avoided from responding with medication to GVHD, the doctors actually want some GVHD.  The thing is, when the donor cells are ramped up and attacking the host/patient, there is also the potential for the GVL effect (Graft Versus Leukemia) or GVT (Graft Versus Tumor in non-leukemic transplant patients).  This is the secret weapon of stem cell transplants, an army roving the body to wipe out anything foreign which includes any lingering cancer cells.  The hope of a transplant as a cure for cancer does not rely solely on the intensity of the conditioning, but rather, the more sophisticated element of the transplant is its micro soldiers that infiltrate the whole body and have the lasting ability to eradicate cancer.  This is the  “immunotherapy” element of a transplant.  This is where I swoon.  Don’t you just love it?  And it has taken decades of research to begin to tap these mysteries.

A virus has taken up residence in Allistaire.  Interestingly, it is a virus which even the most sensitive viral tests at SCCA cannot identify, never the less, she has had copious amounts of snot and some coughing.  It is her first cold in over a year at least.  With this virus we have seen what may be a small flare of GVHD, evidenced by a red spotted rash on her cheeks, spreading out from near her nose.  Additionally, there seems to be a bit of a bumpy, slightly patchy pink rash on parts of her arms, back and chest.  I was instructed to watch carefully for its advance both in terms of spread and speed.  When Allistaire received the infusion of Sten’s stem cells (say that 5 times fast), she was given some mature blood cells from his peripheral blood but primarily his stem cells.  Because the mature blood cells she received from her have mostly died out at this point, the immune fighting cells in Allistaire’s body are immature and have never been exposed to pathogens and are presently “uncoordinated” in their assault on this viral invader.  Hence, both the virus and places like her skin are under attack.  Apparently this pairing of having a virus and a flare of GVHD is very common.  In fact, when there is evidence of GVHD, the doctors then go looking for an infection.

The other possible cause of this potential GVHD flare is the removal of one of her immunsuppressants and the tapering of the other.  According to the protocol for her transplant, her MMF was to be stopped at Day+35.  Typically at SCCA they would rather taper the MMF rather than stop it abruptly.  However, Allistaire has clearly and repeatedly demonstrated that she has very aggressive disease putting her at extremely high risk for relapse even now.  Removing the immune suppressants releases the hold on the T-cells which we hope will identify and wipe out any remaining cancer cells. For this reason, the doctors are very motivated to remove all immune suppression as rapidly as is safe to do so.    So about a week ago her MMF was stopped all together.  Then this Monday, 2/22, we began to taper her tacrolimus on Day+41, whereas the protocol calls for the taper to begin on Day+180.  During this tapering process, she will be “watched like a hawk,” as the BMT staff seems to like to say, looking for any signs of GVHD and potentially backing off or slowing down on her taper if necessary.  I am told that in these Haplo transplants, it is more common to see GVHD later than in unrelated-matched donor transplants (probably because of the post-transplant cyclophosphamide).  More typically, acute GVHD is seen around Day+60 and later.

There is in the transplant world a magic number.  One-hundred.  One-hundred days is a song, like some mantra, some enchantment, a mystical goal out there in the fog.  The standard is that, baring any serious complications, a patient’s Hickman line is pulled on Day+100 and is allowed at long last, to return home.  I haven’t calculated the date exactly, but I know in Allistaire’s case, Day+100 is somewhere around mid-April.  It’s out there.  The date I avoid, I skirt around.  I only allow it to linger in my periphery.  I will not look it straight on.  I am too well acquainted with disappointment.  I keep my head down and we trudge on, willing ourselves not to be tired, not to be discouraged.

In August 2013, I was told in the most direct way, that Allistaire’s only chance for survival was a second bone marrow transplant.  At that time, she was only Day+50 post her first transplant.  You must wait an absolute minimum of six months between transplants to even have a chance of survival.  For us that meant December.  December was impossibly far off and the idea of going through it all over again was the most overwhelming moment of my life.  People say the day of diagnosis is the worst.  I most heartily disagree.  When you are diagnosed, most of the time you have a plan, a means of response, hope that you can make it through.  But what about when you’ve done the thing you came to do?  You tried the big gun.  And it just didn’t work.  It wasn’t enough.  And now your foe is even stronger than when you first began because it has mutated and become resistant at the very same moment that you are at your weakest, your most worn-down.  But then Allistaire went back into remission with one round of chemo and there continued to be no more evidence of her disease as she completed a total of seven rounds of chemo post transplant.  So when the day came for her one-year post-transplant follow-up and all looked well, I kept quiet.  I was so very tired you see.  I never asked about that second transplant.  I just smiled and let myself finally feel a bit at ease.

Looking back, I understand the depth of that woman’s fatigue, but part of me screams, “You fool!”  What if we had done that second transplant then?  Her body was in great shape.  No heart failure.  No evidence of disease.  A perfect time really for a second transplant.  But I didn’t ask.  I was tired.  I just wanted to run as fast as could out of that cancer world and have a shot at normal life.  Well, really I can’t remember if I asked or not.  But even if I did, I must have accepted that answer.  I’m not going to let that happen this time, no matter how weary I may be.  I keep pressing the question.  What are we doing to help prevent relapse?  Okay, okay, we’ll do that, but what else can we do?  What about this?  What about that?  As with so much in the world of cancer treatment, we are dealing in the world of utter unknowns.  Dr. Meshinchi told me today that Allistaire’s specific MLL (Multi-Lineage Leukemia) translocation where chromosome 11 just broke off and attached to another chromosome, is unique among the 3,000 pediatric AML samples he has in his database.  There is no data to say what someone is Allistaire’s very unique situation most benefits from.  And every form of treatment has the potential for side-effects and the question is always, are those potential risks worth the unknown, untried benefit?

For now the plan is this: we will rapidly taper off all immune suppressants as fast as possible while trying to avoid GVHD in any severity.  The hope is to allow the T-cells to have the brakes taken off of them and allow them free reign to roam wide and vigorously to eliminate any remaining cancer cells.  Ironically, if there is no evidence of GVHD, we are planning on a bold move, rarely attempted, to elicit a GVHD response.  The goal is to be off of all immune suppressants by Day+100 and if at that time there has been no evidence of GVHD, Allistaire will be given DLI (Donor Lymphocyte Infusion).  DLI is an infusion of just lymphocytes from Sten.  There are probably enough stored cells from his stem cell donation to get the necessary number of lymphocytes.  If not, he can do a simple blood donation which would not require GCSF shots because it would not include stem cells.  These donor lymphocytes would be infused into Allistaire in hopes that the white-blood cell hunters will recognize Allistaire as foreign and go on the war-path.  Soheil does not recall them ever trying this “prophylactic” DLI approach.  DLI has been given in the context of minimal residual disease in hopes to wipe out tiny bits of cancer, but never or very rarely when there is no actual evidence of disease.  If she were to get DLI and it was well tolerated, she would be given a larger second dose about a month later.  This also means that we have a good chance of having to be out in Seattle longer.  It is all a matter of waiting and seeing.

A few weeks ago I found myself feeling extremely down, baffled and frustrated with my deep sense of sadness.  We had just been discharged from the hospital and moved into our apartment at Ronald McDonald House.  Allistaire was doing amazingly well, yet I could not shake saturating sadness.  It was an act of will to hold back the tide of tears threatening to swamp my little boat.  Perhaps like a runner in an ultra-marathon, having finally made it through transplant, I found all my reserves of energy come crashing down.  I felt tired to my very core.  When I tried to force myself to look up, all I could see were the sad, tired faces of my friends who have lost their children.  I kept thinking of Stevie and Lilly reduced to ashes.  How many?  Sara, Ruby, Mario, Benton, Jaxon, Tristin, Christian, Pantpreet, Nolan, Jordan, Marleigh, Howie, Cyrus, Zach, Karlee, Bella, Lilly, Stevie.  These are the children who have died in the time Allistaire has been in treatment – children and/or their parents that I have known – not even close to the total number that have died.  These are the faces I have known.  Though I have much to rejoice in with Allistaire’s progress, it has sometimes felt like her death is inevitable, just a matter of time.  Sometimes my whole vision is consumed with the bright faces of children gone still.  Home and a life freed from the grips of cancer sometimes seems like an impossible dream.

But there are stirrings see?  Whisperings.  Eyes a blaze with zeal.  Minds whirling with ideas.  Happenings.  Little discoveries and victories that are starting to turn the tide.  As the earth has reached the furthest reaches of its orbit, it has begun its journey back toward the sun, the earth warming and throbbing with life, unfurling.  There are stirrings too in the world of cancer research.  Great wonders have begun to be revealed.  While it has literally taken decades and decades of research to get here, there is now starting to be a new world of promising cancer treatments which look in and down to the genetic level, down to the world of molecules.  Immunotherapy, in which the intricacies of a patient’s own immune system is harnessed to track down and obliterate cancer while sparing healthy cells, is making incredible advances.  Like a wild-fire that starts with a mere spark, so it seems is the world of immunotherapy.  There is hope that the world of cancer treatment is on the verge of a tremendous revolution.  There is hope that we are on the cusp of seeing a future for cancer patients that will look radically different from that dominated by the standard weaponry of chemotherapy and radiation.

Right at the center of this immunotherapy revolution in cancer treatment is our much beloved Fred Hutchinson Cancer Research Center.  Check out this article from The Huffington Post that tells about the successes of Dr. Stanley Riddell of Fred Hutch which has yielded amazing results: putting cancer patients who have failed all other forms of treatment into remission at staggering rates using T-cells.  Everywhere I turn at Fred Hutch there are new amazing trials and areas of research underway.  Allistaire’s clinic attending, Dr. Soheil Meshinchi, and our dear Dr. Marie Bleakley are working on designing TCR T-cells that target highly specific proteins found only on leukemic cells.  I sit and ask Soheil question after question and listen with mouth gaping, on the edge of my seat, eager to hear where the world is headed.

But there have also been moments as I’ve sat in wonder that I also find myself grieving.  All of these advances are far too late for the eighteen children whose names I listed above.  Much is even too late for Allistaire.  Just four years have passed since she was first diagnosed and already the treatment of AML has changed.  There are new tests done at the point of diagnosis to better determine what course of treatment works best with the individual’s unique disease.  There are new treatment options that simply did not previously exist. It was only in April 2012 that the very first child was treated with genetically modified T-cells.  I wonder what it would be like if Allistaire were diagnosed today, rather than four years ago.  How much better would her chance of survival be?  I also hear Soheil mention over and over again, “it’s a matter or resources…if we had the resources…”  Resources!!!!!  Sometimes I want to scream.  So you mean, if you had the resources you could do this and this and this and give my child the treatment she so desperately needs?  But you see, resources are scarce and government funding has been in short supply.  These very brilliant, intelligent brains that should be devoting their time and energy to research, to what their good at, have been having to run around trying to scrape up money to keep their labs going, to find a way to pay to design that test, that piece of equipment, get the research from the lab to treatment in the clinic.

You know what I want to see?  I want to see cancer research accelerated so that fewer kids and moms and brothers and friends have to have their lives cut short.  I want to see treatments that actually cure! I want to see treatments that cure without poisoning hearts and kidneys and brains!  I want to watch in wonder as scientists learn to use our very own beautiful, wild, amazing immune systems to obliterate cancer.  And science is science – all these advances in understanding the genetic base for not only cancer, but for so many diseases, and how to make genetic modifications and therapies promises to benefit lives touching each one of us!

I’m going to get on my bike again this summer of 2016 and ride to accelerate research, to save lives faster, to obliterate cancer.  I’m on Team Baldy Tops again this year in Obliteride and I’d love to have you join us!  Come on out the weekend of August 13-14th and ride with us.  There are routes for every skill level, from 10 miles to 150 miles.  If you’re not up for riding, you can still join our team as a virtual rider and raise funds for cancer research.  And easiest of all, you can donate!  One-hundred percent of all funds raised in Obliteride go to cancer research at Fred Hutch!

Hope is being able to imagine a world that looks different than it does now.  The cold and dark of winter is turning toward the bright zeal of spring.  One day kids diagnosed with cancer won’t have to die, but can be cured and go on to flourish in this life.  One day your mom, your wife, your sister, your daughter won’t have to fear breast and ovarian cancer and having to make the brutal choice of whether or not to cut out chunks of her womanhood.  One day you won’t have to watch your dad whither away or lose your best friend.  While my ultimate hope for life overcoming death rests in Jesus Christ and His promises of redemption, resurrection and a new heaven and a new earth, it is joy to see His grace in this lifetime as this vicious disease has begun to meet its match.

I will ride in Obliteride again this year because I will forever be indebted to Fred Hutchinson Cancer Research Center.  Allistaire would not be alive today were it not for the research, the clinical trials and the treatment she has received through Fred Hutch.  I ride in gratitude for my child’s life.  I ride in sorrow for the children I’ve known who have died.  I ride in hope for cures for cancer!

Check out this great video of Allistaire promoting Obliteride, now showing in movie theaters in the Seattle area.

Donate HERE to support me in Obliteride to end cancer!

Check out all the details at Obliteride.org

See what Obliteride looked like last summer and catch glimpses of our awesome Team Baldy Tops

Learn more about Immunotherapy

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