Tag Archives: TBI

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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Transplant, Haplo-Style

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FullSizeRender-18FullSizeRender-34FullSizeRender-35FullSizeRender-9FullSizeRender-16FullSizeRender-15FullSizeRender-10FullSizeRender-11FullSizeRender-12FullSizeRender-11FullSizeRender-7You look out upon a field studded with rocks, rocks small that huddle together in the hand like eggs in a nest, fist-sized rocks, rocks you think if you gave them all your strength you could heave up out of that earth, hold to your chest, hugging them round with your arms.  And here and there, a few scattered boulders.  Boulders, monoliths, enormities that stand silhouetted against the sky.

How can I ever gather them all?  The task overwhelms.  Scattered all about they don’t look like much.  Yet to convey the enormity of the day, one massive boulder would never suffice.  No, all those rocks would be necessary.  And not just a great pile, no, no, an intricately designed wall.  Or better yet, something yet more complex: a dome formed with each rock set carefully in place.  Rock against rock.  Force pressing up against force.  Rocks tucked tight so that the tension could somehow hold up the curvature.

To come to this day, this day seemingly like hundreds of others, has required a hundred thousand minute steps.  How many times has a nurse “entered” her line?  Fifteen seconds of scrub time.  Fifteen seconds of dry time.  How many sets of vitals?  How many CBCs (Complete Blood Count)?  How many echos and bone marrow biopsies?  How many times have her cells gone hurtling past a laser, striking that electron off to release a burst of energy at a precise wavelength to reveal its identity?  How many transfusions of red blood and platelets?  How many emails flying back and forth between doctors, careful to consider all facets of her case, what will be best? What meds?  What protocols?  How many great hurdles overcome?  How many slim possibilities made real?

When at last the time came, when at last word came that, “the cells are here,” and the room began to flood with folk, tears came quick.  Tears of being just plain overwhelmedly grateful.  The weight of the bounty, the absolute wonder of all that has taken place to bring us to this day.  This day.  This day of transplant.  This day of hope, of an open door, of another gift, another opportunity to pull a weapon from the scabbard and thrust it into the heart of those cancer cells.  And the faces…faces dear to us, faces with whom the most difficult possible conversations have taken place.  Faces beaming with joy for having walked long segments of this road with us.  And though the faces of many were not present, I saw them still.  In my mind there I saw Dr. Pollard, Dr. Gardner, Dr. Tarlock, Dr. Cooper, Dr. Berstein, Dr. Law, Dr. Kemna, Dr. Hong, Dr. Albers, the faces of countless nurses, of pathologists, and lab techs, Mohammed and Bonnie.  The list could go on and on.  If this was a Golden Globe I’d be kicked off the stage.

And there was something so poignant about the setting.  The plan had been all along to put Allistaire in the ICU for the most crucial, dangerous portions of transplant.  The ICU has many more means of monitoring her heart and an array of cardiac meds that cannot be given on the Cancer Unit.  Allistaire cannot be handled by standard protocols alone.  Everything that happens with intense immune responses result in the potential for great fluid shifts which in turn can radically impact the heart.  The first event of concern was simply receiving her cells.  As with all blood products, there is always the risk of an allergic type reaction, but even more significant is the possibility of a “cytokine storm,” due to the large mis-match between Sten’s stem cells and her own body.  It is like two great waves crashing into one another.  This clash of contrasts can result in a cascade of immune system signally and response that can be severe enough to be fatal.

When I asked the nurse what room we would be in the ICU, my mouth dropped at her response.  Forest PICU 6 room 321.  The very room we spent 70 of the 80 days Allistaire was in the PICU last January through April.  So as the morning turned to afternoon and the cells finally began to flow into her line, and the “Happy Transplant Day,” song was ended, and someone yelled, “Speech!” – I simply could not resist.  I could not resist proclaiming the wonder that we had come full circle, that in the span of one entire year, we had returned to this very room to at long last enter this gauntlet of transplant.  As I stood there before that little throng of medical staff and family, the bare white unadorned walls of this agonizingly familiar ICU room constraining, my heart was bursting, my few words fumbling to offer up a naming of gift and thanks.  Thanks for each person present and not present who has so faithfully, and graciously and compassionately done their part.  We have each put our head into the wind and pressed forward though relentlessly buffeted, somehow forward motion has been attained and as we look back, wow, wow, who can believe we have covered such a great distance?!

In the center of the room, a bright flash of spirit.  Allistaire Kieron Anderson, a spirit whose light is like sparkling pink lemonade, giddy, curls upon curls, curls of blonde hair tinged in pink and curves of cheek and chin with light glinting out of her blue eyes.  Lord, you make a crazy claim, one hard to fathom, sometimes hard to swallow, yet simultaneously gorgeous and wondrous:  You know all of our days before one of them comes to be (Psalm 139:16).  I have sought your face, I have yearned to walk this life held in You and one year ago, you said, “Come, follow Me, take my hand and let us walk this way, down this road leading into darkness,” as alarms blared on pumps and CT scans and echocardiograms declared disaster. I don’t know the road ahead, but as I turn, craning my neck back to look down that dark road behind me, hand gripped in Yours, I am simply in awe, in awe of the dangers and sorrows, of tears that threatened to drown and always Your hand, never letting go, and always Your Word, Your quiet voice entreating me to fix my eyes on You, on You and rest child, rest, rest in Me though all around you, you feel the ground giving way and the night presses in thick and you can’t seem to catch your breath, and the teeth flash and your whole being groans.

And startlingly, here we are, we have circled back around.  The obvious question is, “Why?  Why Lord?  What was the point of all that?  I mean really, really, did we really have to take what feels like a year-long detour through treacherous territory only to come back to where we started yet more bloodied and bruised, wounds deep?”  So much lost.  So much time.  So much separation.  So much damage.  So very many tears.  The lacerations and scars are easy to see yet don’t begin to reveal the depth of ravaging.  What is harder still to see is the other-worldly beauty, the treasure often imperceptible.  Seeds in dirt don’t look like much.  Seeds sailing on winds…The Lord’s aim has never been transplant.  He aims for my heart, for all hearts and sometimes in great peril and pressing darkness we are more able to see aright, to incline our ear to His voice, to have His Word made full and pulsing with life, our stiff necks bend low and we come to worship the God of creation as never before.  Getting to transplant has never been hard for the Lord.  To say that it has been trivial in His sight sounds callous only when I fail to set it against the enormity of His heart for me, for me a child of Adam, a child of God.  But I have no doubt God smiled broad and His face beamed as we gathered in that small room and were witness to the marvel of the human body, to the tenacious brokenness of creation, to the wonders of medicine and human endeavor, and to hope, hope for a way through.

I don’t know the road ahead and there is the quiver of trepidation, knowing there are still many dangers.  But on this gray January day with rain intent on saturating, my heart feels heavy and full, full with the satiation of joy and full of yearning to keep leaning in, inclining my face to the face of my God.  I look at this little girl and marvel that I should be so blessed to call her daughter and to walk this road with her, to hold her sweet little hand along the way, and to incline my ear to the pleasure of her small sweet voice, a voice proclaiming dreams of a future and joy for the present, delight in simply putting color down on paper, color alongside color alongside color.

Allistaire has made it through five fractions of focal radiation to the chloromas in her sinuses, eight fractions of TBI (Total Body Irradiation), three doses of the chemotherapy Fludarabine, all in preparation, a “conditioning,” for transplant.  The only direct immediate result has been fatigue and a C-Diff (Clostridium Difficule) infection due to the effects of radiation on her gut for which she is now on Flagel.  On Monday, on her day of rest, Sten’s birthday, Sten received his fifth and final shot of GCSF (Granulocyte Colony Stimulating Factor).  Then, in the early afternoon over the course of several hours, his blood was pulled out, and through the action of centrifugal force, the lighter weight white blood cells including CD34 stem cells, were separated out and the remaining blood returned, a process known as apherisis.  In total, the goal of 5-6 million CD34 cells/kg was achieved in a mere 187ml of Sten’s blood.  Sten’s blood was then processed, having both the red blood cells and platelets removed because of the antibodies Allistaire has formed against them.  When that bag of orangish red blood arrived in Allistaire’s room on Transplant Day, it contained nearly 120 million CD34 stem cells within 148 ml.

Due to extreme weariness at countless plans dashed, I felt no need to explain this transplant of Allistaire’s until it actually came to fruition.  So at last it is clearly time to explain what we’re doing here because truly there are so many different types of bone marrow transplants, each specially designed and chosen to fit with the uniqueness of the patient and their disease.  In order to make any sense of what is happening in Allistaire’s transplant, a brief overview of bone marrow transplants seems necessary.  When transplants were first developed by Dr. Donnall Thomas of Fred Hutchinson Cancer Research Center in the 1960’s and 70’s, the goal was to have the ability to use extreme doses of chemotherapy and radiation to destroy a leukemia patient’s bone marrow, the source of their cancer, and then “rescue” them by giving an infusion of another person’s bone marrow.  Without this “rescue,” the obliterated marrow could never recover and the patient would die.  Only later was it discovered that a key component of a bone marrow transplant’s potential to cure comes from the immunotherapy effect of Graft Versus Leukemia (GVL).  More about that in a bit.

All bone marrow transplants  begin with “conditioning,” which primarily attempts to eradicate any remaining cancer cells and to make way for the incoming stem cells.  Patients have the highest chance of a “successful” transplant when they go into transplant in remission which is generally defined as little to no detectable disease.  In Leukemia this means 5% or less disease in the marrow and ideally no extramedullary disease (cancer cells which form tumors outside of the marrow).  Each transplant protocol has specific requirements regarding disease status which determines whether or not a patient will be approved to move forward with a transplant.  Additionally, there are numerous conditions of health, especially regarding the major organs (heart, liver, kidneys, etc).  Determining which specific transplant regimen is best for the patient requires a great deal of data gathering and consideration.  All have variable elements of benefit and risk.

The two key defining components of a bone marrow transplant are the type of conditioning and the stem cell source.  There are a number of different types and doses of chemotherapy which may be used in conditioning.  Additionally, a patient may or may not also receive radiation as part of conditioning.  Sometimes the radiation is focused only on certain areas of the body where there have been or are tumors, or only the lymph nodes may be targeted.  In Allistaire’s case, she had both focal radiation and TBI (Total Body Irradiation) which sends radiation throughout the entire body.  Depending on the patient’s health, they may or may not be able to endure full intensity conditioning.  For older transplant patients who may not be in optimal health, “mini transplants,” were developed by Dr. Rainer Storb, also of Fred Hutch Cancer Research.  In patients like Allistaire who have one or more major organ systems that have been compromised, intensity of conditioning is an enormous consideration.  While Dr. Bleakley was very hesitant to give Allistaire a full-intensity conditioning transplant given the status of her heart, the extreme aggressiveness of her disease necessitated this in order to give her any chance of a cure.

The second component that distinguishes a transplant, is the stem cell source used for “rescue” after the marrow has been decimated. This might be may very favorite part of transplant.  Rescue.  A word conjuring up vivid, dramatic images, harrowing situations, bravery, sacrifice, love.  To read specifically about about the beauty of “rescue,” as I wrote about in Allistaire’s first transplant click HERE.  Originally, all transplants used whole marrow as the stem cell source which meant all donors had bone marrow removed directly from their bones.  In time, a method was developed for harvesting stem cells from the peripheral blood with the aid of GCSF (Granulocyte Colony Stimulating Factor).  GCSF promotes the production of stem cells in the marrow and their mobilization into the peripheral blood where they are collected by apherisis.  This is the means by which Sten donated his stem cells.  Lastly, the most recently developed stem cell source is that of cord blood.  Cord blood is blood that is extracted from the umbilical cord of a newborn baby.  Mothers can opt to donate their child’s cord blood which is then registered with the National Marrow Registry and banked, awaiting a person in need of a transplant.  It should be noted that some cancer patients have their own stem cells harvested and then reinfused after conditioning.  This type of transplant is known as an Autologous transplant.  However, whenever a particular blood cell line itself is the source of a patient’s cancer, as in the case of leukemia, they cannot be “rescued,” with their own stem cells as these are the source of their cancer.  In an Allogeneic transplant, the patient receives another person’s stem cells.

Many clinical trials have been conducted exploring the risks and benefits of diverse combinations of conditioning regimens and stem cell sources.  However, a major consideration in determining what type of stem cell source to use in a patient’s transplant is simply availability.  To receive someone else’s bone marrow fundamentally means you are receiving another person’s immune system.  Our immune system is able to accomplish the extraordinary defense of our bodies in large part because of its ability to identify “self” and “other.”  This is actually why cancer is so hard to eradicate.  In essence, the immune system of a person with cancer has failed to identify their cancer cells as “other.”  This is because cancer cells develop from normal healthy cells.  The goal of virtually all cancer treatment is to discern and target the subtle differences between healthy cells and cancer cells.  Typically a prospective transplant patient is “matched” to the greatest degree possible with the incoming stem cells so that the incoming cells look as close to “self” as possible.  This is done through HLA typing.  On human’s chromosome 6, there is a grouping of genes that encode for Human Leukocyte Antigens (HLA) which are then presented on the cell surface of all cells in a person’s body.  It is like a bar code (in the form of cell surface proteins) used as a unique identifier for that person.  These HLA proteins are what distinguish one individual person from another and are what allow a person’s immune system to identify “self” from “other.”  The immune system aims to identify and destroy anything “other.”  For this reason, it is essential that there be a significant degree of HLA matching between the patient and the incoming stem cells.  Otherwise, the patient’s own immune system would heartily attack and destroy the incoming stem cells.  When this happens it is known as “graft failure.”

Another potentially severe complication of a HLA mismatch between patient and donor is known as GVHD (Graft Versus Host Disease).  In this situation, the incoming donor cells may identify the patient’s body as “other” and set about attacking the patient’s tissues, most commonly the skin, gut and liver.  GVHD can even be fatal.  The ways to prevent or reduce GVHD have typically been to select the highest degree of HLA matching and/or give the patient immune suppressants which suppress the immune fighting T-cells within the graft/donor cells.  A major down side of immune suppressants is that they also suppress the incoming immune system’s ability to fight infection which can often lead to life-threatening infections.  As research into GVHD progresses, scientists are learning more about what subsets of T-cells are responsible for the majority of GVHD.  Dr. Bleakley has been conducting a clinical trial in which the “naive T-cells” are depleted or removed from the donor cells prior to infusion into the transplant patient. This has succeeded in substantially reducing the incidence of chronic GVHD.  Click HERE to read more about this fascinating research yielding substantially better results.

The highest degree of HLA matching is a 10 out of 10 match, which means the patient’s cells share the same genetic code as the donor cells at the ten major points on Chromosome 6.  In order to accomplish this matching, patient and donor most often share very similar ethnicity.  It is more difficult to find a good match for those patients who are ethnically diverse, whose ethnicity is rarer or derives from parts of the world in which there is very low Bone Marrow Registry participation.  For example, one of our friend’s was from the indigenous tribes of Guatemala.  Her specific ethnicity is simply rare in the world.  Another friend with sickle-cell was Ugandan, a part of the world with very little registry participation.  Almost amusingly, in Allistaire’s case she may be “too white,” in that she has never had a single match within the United States.  Her matched donors have always been found through the German registry.  She was unable to participate in Dr. Bleakley’s naive t-cell depleted protocol because it requires a U.S. donor.  For this reason, patients will have better transplant options when more people join the Bone Marrow Registry, thus increasing the likelihood that the patient can find a match.  For patients who have no sufficient bone marrow matches, cord blood can be a good option because it must be matched at fewer points (max of 6 out of 6).  Again, this is why donating your newborn’s cord can literally save a life!

As noted, the two major distinguishing components of a stem cell transplant are the type of conditioning and the type of stem cell source.  There is no one right transplant as each patient comes into needing transplant in varying degrees of health, disease status and access to stem cell source.  Allistaire went into her first stem cell transplant in June 2013 with nearly 70% disease in her marrow and 9 chloromas/tumors.  Otherwise her body was “healthy.”  Nevertheless, because of the enormity of her disease, she was only able to receive a transplant because of a specific transplant clinical trial through Fred Hutch that did not require remission.  She would have been dead long ago had it not been for that clinical trial.  When Allistaire relapsed again in October 2014 and needed a second transplant, we were aiming to use the “naive T-cell depleted transplant,” which did require remission.  Fortunately remission was attained but Allistaire had no U.S. matches and Dr. Bleakley set about trying to gain permission from the FDA and the German registry to allow Allistaire to use the available matched German donor from outside the U.S.

However, last January the cumulative effect of her years of chemotherapy and the severe typhlitus infection put her into heart failure.  She no longer qualified for transplant because of the extremely poor function of her heart which nearly resulted in her death.  Even once she regained some function, for a very long time she would have only qualified for low-conditioning transplants.  However, no low-conditioning transplant could sufficiently wipe out her extremely aggressive disease.  So for the past 10-11 months the goal has been to keep her cancer under control while giving her heart the time to possibly regain enough strength to qualify for a full-intensity conditioning transplant.  This has been extremely difficult as the oncologists have had limited treatment options.  Many types of chemotherapy themselves can be hard on the heart and/or greatly assault the marrow, effectively suppressing the immune system which then allows for the possibility of life-threatening infections.  Not only can the infection itself kill you, but the body’s attempt to fight the infection often causes major fluid shifts, changes in heart rates and blood pressures, all of which can put major strain on the heart.  Even seemingly minor situations like the two instances of an ileus resulted in all her medications, fluids and sustenance being given IV which puts a great burden on the heart.  It is a tough situation all around.  This was the reason for trying the WT1 modified T-cells and the decision to try Mylotarg (available only on a compassionate-use basis through Fred Hutch).  And while the Mylotarg was impressively effective against Allistaire’s cancer, one problem has been the incidence of cancer cells mutating in resistance to it and the risk of causing SOS (severe liver complication) in the context of transplant (which is why it was pulled by the FDA in 2010).

Once Allistaire’s heart began gaining strength as evidenced by ejection fractions (as determined by echocardiogram) in the high 30s and low 40s, the discussion began in earnest as to whether or not it might finally be time to give one more great thrust toward transplant.  Countless conversations between the Oncology, Bone Marrow Transplant and Cardiology doctors debated risks and benefits which were strongly tied to both keeping her disease under control long enough to get to transplant and what transplant regimen could give Allistaire the best chance at a cure and not kill her in the process.  When Dr. Bleakley first suggested the real possibility of a Haplo transplant, my gut response was to spit that idea right back out.  A Haplo-identical transplant is one in which the patient is half matched (5 out of 10) with a parent or sibling.

Because of this extreme mismatch, Haplo transplants have historically been associated with many poor outcomes including graft failure, high incidence of severe GVHD, high rates of infection and relapse.  Each awful complication results from attempts to respond and mitigate one of these other complications.  For example, because the HLA is only half matched between patient and donor, the patient’s immune system can attack and wipe out the graft/donor immune system.  Graft failure can be mitigated by increasing the intensity of conditioning to suppress the patient’s own immune system.  However, there is still the likelihood of severe and/or chronic GVHD where the donor immune system attacks the patient.  In order to combat this, the patient is given immune suppressants to tamp down the immune response in the donor cells.  This in turn results in severely lessened ability to fight infection and may reduce the Graft Versus Leukemia effect which is the advantageous and desirable element of the mismatch between “self” and “other.”  Remember that because cancer cells derive from healthy cells, they carry the HLA typing of the patient so when donor cells come into the patient’s body, they are more able to recognize the cancer cells as “other” and destroy them. Dr. Bleakley provided me with this paper, (Modern Approaches to HLA-haploidentical blood or marrow transplantation), which gives a historical overview of Haplo transplants.

Dr. Bleakley went on to describe a more recent approach to Haplo transplants which has yielded results on par with that of standard unrelated-matched donor transplants.  The most unique aspect of this transplant is that the extreme mismatch between patient and donor (half-matched parent or sibling) which would naturally produce immense GVHD, is greatly mitigated by giving a strong dose of the chemotherapy, cyclophosphamide (also known as Cytoxan), on days 3 and 4 after the infusion of the donor cells (the actual day of transplant).  This also occurs in the absence of any immune suppressants which are traditionally started at Day-1 (the day before transplant which is known as Day 0).  What this means is that when the donor cells go into the patient’s body, there is an uproar of immune systems in which the donor immune system begins to respond to the presence of “other” by rapidly dividing its Tcells and beginning the process of fight or GVHD.  There is nothing to lessen this response of the incoming donor cells because there are no immune suppressants present.  This is where the possibility of a cytokine storm comes in and where severe GVHD could take off if there was no intervening.  The possible cytokine storm must simply be managed as best as possible but the revving up of the donor Tcells is stopped in its tracks by these two large doses of cyclophosphamide on Day+3 and +4.  The cyclophosphamide targets rapidly dividing cells including the Tcells, which left unchecked, would produce immense GVHD.  The way that the whole graft/donor cells are not altogether wiped out by this chemo is that, according to a recent discovery, stem cells have proteins on their cell surfaces which make them immune to this particular chemo.  Also left, are a subset of Tcells which were not highly activated and can still go on to fight infection and provide GVL (Graft Versus Leukemia).  There are various versions of this “post-transplant Cy.”  Allistaire’s includes TBI (Total Body Irradiation) in the conditioning portion of the transplant which is essential given the aggressiveness of her AML and the ongoing presence of extramedullary disease.  Other “post-transplant Cy,” transplants may have reduced intensity conditioning.  Dr. Bleakley followed a transplant regimen based on the research described in this article (Total Body Irradiation-Based Myeloblative Haploidentical Stem Cell Transplantation in Patients Without Matched Sibling Donors), published in July 2015.

So at long last we come to this week of transplant.  And for those of you with eyes glazed over or simply head asleep on the keyboard, part of my motivation in going to such lengths to explain this transplant is not only for my own documentation, but also for folks out there in situations like ours who may need detailed information.  Given the condition of Allistaire’s heart and the aggressiveness of her disease, we therefore, chose a transplant with full-intensity conditioning and most importantly, full dose TBI which you can only have once in a lifetime.  The reason for choosing Sten as Allistaire’s donor is for three main reasons.  First off, Allistaire’s chance of both surviving transplant and having it actually cure her is extremely low and so ethically, the doctors do not feel right about asking an unrelated donor to undergo risk and burden to be her donor.  Secondly, given the highly fluctuating nature of Allistaire’s health and disease, the projected date of transplant could easily change which might mean we lose our donor who has constrained availability and requires more pre-planning because they would be donating on the other side of the earth (remember no U.S. donor matches).  Sten, as Allistaire’s father, is more than willing to take on risk and burden and is a highly committed and extremely flexible donor.  By the way, both he and I were options but it was concluded he was the better choice.  Lastly, the statistics for acute and chronic GVHD, NRM (non-relapse mortality), relapse, DFS (2 year Disease Free Survival) and OS (2 year Overall Survival), were on parr with the statistics for standard unrelated-matched donor transplants.  This means that we have the opportunity to give Allistaire as good of a chance at survival and a cure with her dad as a half HLA matched (haplo) donor as she would with a fully matched 10 out of 10 HLA matched unrelated donor with the added benefit that comes with having your awesome dad who is willing to literally lay down his life for you.

Thus far, Allistaire has received her infusion of Sten’s stem cells, essentially getting her transplant on Tuesday, January 12th.  She had no allergic reaction to the cells.  However, later in the evening she had a fever with higher heart rates.  Whenever an immune suppressed patient (in her case because of conditioning, not immune suppressing medications), gets a fever, blood cultures are drawn and antibiotics are started in case the fever is evidence of an infection.  Thankfully, Allistaire’s fever seems only related to her response to the mismatch of the incoming donor cells.  Dr. Bleakley was quite pleased as the fever was evidence of an immune response without the danger of a full on cytokine storm.

In the last few days, Allistaire has started to get some mouth sores, an expected result of conditioning which especially impacts rapidly dividing cells.  This means all the cells lining the digestive tract from the mouth all the way out the other side are hit hard.  This can result in mucoscitis.  She is more gaggy and nauseous, has thrown up a few time and has begun to eat far less.  At this point we are prioritizing her drinking the necessary fluids and continuing to take her oral meds, (rather than giving her IV fluids and IV meds which would be harder on her heart).  We are attempting to have her drink a pint of milk at each meal time to provide some calories in the form of protein and fat.  She may soon require her nutrition to be converted to TPN and lipids which are essentially IV forms of sustenance.

The next storm on the horizon begins tomorrow with the two days worth of cyclophosphamide infusions.  A side effect of cyclophosphamide can be bladder bleeding which they try to counteract with hyper-hydrating and a medication called Mesna.  Because of Allistaire’s weaker heart, they are reducing the hydration from the standard 1.5 times maintenance to 1.25 and are hopeful that this will both be enough to prevent the bladder bleeding and not overwhelm her heart.  Another serious and potentially fatal, but rare, possible side effect of cyclophosphamide is acute cardiomyopathy due to hemorrhagic myocarditis.  Depending on how things go, Allistiare could be transferred from the ICU back to the Cancer Unit early next week.

Honestly, it is an absolute wonder that she ever made it to this transplant.  Whether or not she will survive the transplant or it will be successful at curing her of her cancer are totally separate questions.  I am just simply in awe that we are here.  The Lord will continue to be faithful, morning by morning, come what may.

To join the Bone Marrow Registry, go to Be The Match

Learn about how to donate your baby’s cord bloodFullSizeRender-25 FullSizeRender-23 FullSizeRender-38 IMG_2372 IMG_2365 IMG_2360 IMG_2356 FullSizeRender-40 FullSizeRender-39 IMG_7554 IMG_7543 IMG_2354 IMG_2352 FullSizeRender-41 IMG_2333 IMG_2325 IMG_2312 IMG_2303 IMG_2302 IMG_2300 IMG_2393 FullSizeRender-13 FullSizeRender-8 IMG_2391 FullSizeRender-7 FullSizeRender-12 FullSizeRender-14 FullSizeRender-13 FullSizeRender-21 FullSizeRender-22 FullSizeRender-19 FullSizeRender-27 FullSizeRender-29 FullSizeRender-28 IMG_2384

 

And So It Begins

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IMG_2272Each night Allistaire crawls to the head of her bead and turns off the flashing “sea urchin,” lights and tears a link from the paper chain.  The chain is still eight links long, but ten have been torn away, time stripping down.  Each morning my alarm goes off in the dark, despite all the mundaneness, the normalcy, I find myself a bit surprised we are still here, still doing this.  I stretch out on a bed that later in the morning will fold into a couch and always marvel at how it is the most comfortable, in this one room out of three in which my life is spread out.  Three bottles of contact cleaner.  Three tubes of toothpaste.  Bags.  I live out of bags.  Bags coming.  Bags going.  And each evening I wash the day’s dishes in the tiny white porcelain sink and am surprised to find another day ending, light gone and moon rising.

Each morning I settle into a quiet spot in Starbucks and drink my double tall, extra-hot, caramel latte and eat my bacon gouda sandwich, looking out the window, gazing but eyes not seeing, wondering, inquiring, inquisitive, curious.  Marveling.  What is this life?  There are so many constraints, bonds, limiting factors, losses, saddnesses, pains that seep out like wounds refusing to heal.  I am walled in, cut off, restrained.  I saw my cross-country skis when I went home, still wrapped new in plastic from a year and a half ago.  My hair shows countless wily grays, rising perpendicular from their counterparts, defiant, declaring their independence, shooting outward at odd angles, more wrinkles gathered around my eyes.  Life proceeds forward with regularity, and we?  We languish.  We circle over and over and over, tight tiny circles, moving between two rooms: Forest Level 7 Room 219 and Ronald McDonald House A Room 362.  Each afternoon we’ve left the hospital on a pass, Allistaire’s little gleeful eyes peeking out over the mask, protecting her from those who might spew viruses into the air.  We move from one room to another room, two small spaces, a figure eight.

For so long we have pushed, straining forward, inertia to get to this point, this first day of transplant, the beginning of conditioning.  “Transplant,” has been the metronome of our days, the ceaseless pound of that one word, the undergirding of all we do, every choice made in orientation to this one goal.  And as the links have fallen away, giddiness has welled, shock and joy that at long last we are coming to the day for which we first came over fourteen months ago.  We are finally about to do what we came to do.  Yet in these last several days, a hush of sadness wafts down like tiny snow flakes, gathering in the cracks.  An odd silence as I take in the lush curve of her cheery cheeks, made more chubby by steroids.  I watch her hands fiddle with a curl, thread back through her blonde hair and I realize how short is the time left with that hair, hair that took a year to grow.  I listen to her happy little voice and watch her eagerness to play, and my heart feels tender from deep bruises.  Oh.  Oh what are we about to do?  What is about to happen to this happy little girl?  As the days have slipped down to two and one, I know that she now, at long last, stands on the threshold of a momentous undertaking.  “TBI (Total Body Irradiation) is like being near the epicenter of a nuclear blast.”  Those words echo quiet, pinging back and forth inside my cranium.  I cannot help but imagine her little naked body, covered in gray ash, devastation and annihilation radiating out around her.  Always Hiroshima with my little one standing at ground zero, knowing I willingly put her there.  “There is a good chance she could die in transplant.”  Late effects.  A broken body, devastated from all the ravaging magnitude of what is to come.

We stand at an open door.

We stand at a door we never thought would open.  With this relapse there was the great fear that she would never get into remission, given that nothing even slowed her cancer before her first transplant.  But remission was achieved and transplant scheduled for March.  Then we watched her heart race at 187 beats a minute as her body agonized to respond to the might of her typhlitus infection.  For two weeks, every other day, she received granulocyte infusions to give her body a means of defense when her own marrow, decimated from chemo, had nothing to offer up.  Fevers and pain meds around the clock, tubes and wires and hoses and monitors.  And at last she came out of that storm and all was peeled away and she appeared herself again, yet now with a heart tattered and weary, heaving, expanding on itself, barely able to exert the force necessary to send oxygen hurtling through all her extremities.  A heart they told us, that would never recover its function.  Round after round of chemo to keep the leukemia at bay, but silently cells continued to infiltrate her flesh, gathering in the open curvatures of her skull, filling and pressing out, gnawing away at bone, forcing her eye up and out.  But what to give her, what will be powerful enough to fight the cancer cells and not also overwhelm her heart that so desperately needs to heal?  Mylotarg.  An anti-CD33 monoclonal antibody drug conjugate, withdrawn by the FDA but made available through Fred Hutch on a compassionate use protocol.  Progress against the cancer but also some sort of infection in the lungs making more chemo dangerous.  Another gift, an attempt at a new therapy, a meticulously designed T-cell sent on a mission to destroy all cells bearing the mark of WT1.  But to no avail, no effect, no ability to slow the onslaught of those cancer cells.  More Mylotarg, more gifts, more open doors.  And behind it all, the compassionate hearts and brilliant minds of doctors sorting through all the details and directing the strategy.  And above and below and hemmed in on all sides, the Lord is at work, closing and opening doors and carefully, meticulously, crafting all the days of these past fourteen months.

We stand at an open door, a door long prayed for, long yearned for, desperate panting, exertion on all levels to open.  And open it He has.  And this morning we walked through.  January 4th, 2016 has come and Allistaire innocently and willingly laid her body down on a little table with a great machine overhead, a machine that would cause a beam of radiation (12 Gy in total) to hurtle through her body, tearing DNA in its path, a mindless destroyer.  She will do this eight times, each time laying on her back and then flipping over onto her stomach.  The first four of eight “fractions,” includes the use of lung blocks, great wedges of a combination of lead and bismuth, to reduce the impact on her lungs; one set for the front and one for the back.  They are carefully set into place on a glass table that sits overtop of her and the doctor checks their placement by X-ray.

Monday through Thursday this week Allistaire will get TBI and then Friday through Sunday she will get the chemotherapy, Fludarabine.  This sums up her “conditioning,” with the intent of myeloablation, a complete destruction of her bone marrow which harbors the source of her cancer and any cancer cells throughout her body.  For Allistaire, Monday is a day of “rest.”  This simply means that there is no treatment that day.  It is a lull.

But really, Monday is a spectacularly significant day.  Monday, January 11th is Sten Karl Anderson’s birthday.  And what gift to give on such a day?  On that day, it will in fact be Sten who is giving the gift.  On January 11th, Sten will sit in a chair for two to three hours with large needles in his veins as his blood is being pulled out, blood replete with stem cells for Allistaire.  On January 7th, Sten will begin five days of GCSF (Granulocyte Colony Stimulating Factor) shots which will prompt his marrow to produce hematopoietic stem cells (HSC) and mobilize them into his bloodstream.  These HSCs are the stem cells that give rise to all the other blood cells in the body.  On the day we celebrate the birth of his dear youngest brother, Jens Hagen Anderson, Sten will begin the process of offering another chance at life to Allistaire.  There is no doubt, these days are a powerful, turbulent combination of joy and sorrow.  We rejoice in Sten’s life beginning and being sustained another year.  We rejoice that he has the uniquely beautiful gift of offering life to Allistaire from his own life, his own blood.  And while we rejoice in the 28 years of life given to Jens and all who have been blessed to know him, we mourn that we no longer have him with us.  Jens will never know 2016.  We mourn that in order to give Allistaire an opportunity to live, we must first bring against her the most powerful weapons medicine has in its arsenal.  We must brutally ravage her body, with the real potential for death, to give her one slim chance to live.

Sometimes, when I let myself go there, when I turn to take the brunt of the sorrows of sickness and death and sin, when I face them head on, when I look them full in the face…I feel such deep agony of pain, a tearing of the sinews, splintering of bones…it is simply too much, I must turn away.  Turn away or drown, turn away or?  How did Christ do it?  How ever did He take on the incomprehensible weight of such brokenness?  Like Moses who could not bear to look full into the holy face of God for fear of death, nor can we look fully into the black.  We cry out, “Why? Why God?  Why don’t you stop this agony?  Why don’t you put all this wretchedness to an end?”  I can tell you this, sickness and death have an incredible power of clarity to reveal how truly broken this world is.  They declare to us that despite all our great intellect and all of our earnest strivings, we are not in control.  This is a double-edged sword, brokenness and finiteness, but isn’t it too gift, gift that this brokenness may end, that it need not be eternal?  Death is a door to the end of brokenness and sin.  Death is a door that, if we kneel to Jesus Christ as God, is the means to eternal life with no more sickness, sin or death.  And you and I might like to scream, with tendons of neck flexed until we go hoarse, “You have done it WRONG!”  We hurl our rage and agony out into the silence, out into a night sky layered thick with stars.  And the stars sing back, not with explanation, not with answers that satisfy, but with a declaration that God is God and He loves us and He has made a way for redemption and for life, and will we bow?

I dwell here, in “the already,” and the “not yet,” a time between times, a time of tension.  I have begun to notice that some of my most favorite songs, songs meant for road trips, for travel, tend to have this interesting quality of two parallel elements of sound.  On the surface, in the forefront, are notes of faster pace, a sort of galloping, running, small, short quicker sounds, building and waning but rising, intensifying, swelling upward.  You feel the tension growing, rising higher and higher.  You long for release, for resolution, for a letting up of the momentum, but at the same time it is tedious, staccato, repetitious.  Below and in parallel, a tandem sound, notes drawn out long, low deep stretched wide, great sweeps of sound undergirding the frenzy above.  I live in the frenzy, in the tedious, in the repetitious, in a tension that builds and longs to be released.  I live in an unresolved state and I ever feel its angst, the thorn that will not be removed.  And yet I listen, I incline my ear to hear that which does not as immediately demand my attention, the sounds that have always been there, the declarations that this life is undergirded.  Sounds of peace, wide broad sweeps across the universe, across time, across this earth and history and ethnicity.  I feel my tension relax as I harken to the sounds that declare redemption has already been accomplished.  Sin and death have already been broken and done away with.  Christ is seated in heaven.  “It is finished,” He cried because ultimately in the cross all has been accomplished, justice and grace.  We finite beings live within the constraints of time, but God is above and beyond and within time.  All has been accomplished.  Only because of this is it well with my soul.DSCN5281IMG_1485 IMG_1491IMG_1354IMG_1346IMG_2559IMG_2560IMG_2817IMG_297111120_10100399384088319_5126860685083336367_nIMG_1066560153_10151311627174094_1955432901_nIMG_3636IMG_3591IMG_0453IMG_0791IMG_1125IMG_1239IMG_1282IMG_1286IMG_1318IMG_179212107786_10153431748189667_4156990417936886173_nIMG_1885IMG_1941IMG_2062IMG_2064IMG_2066IMG_2088IMG_2096IMG_2105
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All I Want for Christmas is a Bone Marrow Transplant

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FullSizeRender-4Winter Solstice is passed.  The darkest night of the year is behind us.  Ever so slowly, at a staggering speed, we make our way back toward the sun.

I can hardly believe the earth has made an almost complete orbit around the sun since that day last January when Allistaire’s immune defenses dropped to zero and typhlitus nearly took her life and ravaged her heart, a heart already made vulnerable by so very many rounds of chemo.  There have been so many very dark days, so many tears, so much uncertainty, so many occasions where all appeared bleak.  And yet…I cannot begin to count the number of barriers overcome, walls knocked down, doors that opened.  I stand back and I survey the road behind us, it both tires me and brings elation, joyous shock, mouth-gaping awe.  The world is just as quiet and just as loud and busy and frantically running around, and I stand, I stand and look around me, and really, I cannot believe we are here.

It  is a grey day.  There is no snow to beautify the land, no hush of quiet, no blue light of early morning snow reflecting the sun’s advance over the horizon.  The earth shows no sign that it knows what has happened, what has transpired in this place.  I look back, back, back over forty-eight months, to a day when I sat in this very seat on a snowy day, back to the day I received Allistaire’s bone marrow results after her first round of chemo.  A zero percent, no identifiable Acute Myeloid Leukemia.  I felt such utter relief.  I could never have imagined how long the road would be before me, of the nearly five hundred days in the hospital that would transpire between then and now and just how sly those cancer cells would be, ever-present, ever ominous, ever intent on dividing endlessly until they foolishly commit suicide by taking the life of their very own body.

I look back, my heart and mind touching back over those points in which I was told, she probably won’t make it, her chances are so very small, in the single digits.  The weightiness of looming dark walls, the snarl of danger ever lurking, threatening to strangle.  We still stand in the dark, there are still looming walls and teeth flashing in the night.  And as I stand in this darkness, where there is so little light to make out the landscape before me, where the way forward is cloaked and unknown…I am smiling.  I want to go up to each person I pass and say, do you know?  Have you heard?  Let me tell you a story, a story of a little girl, little but fierce.  Let me tell you a story of terror, of heartbreak, of hope, of glee, of overcoming, of victory.  For no matter what lies ahead, today is a day of victory.  This day is a day of incalculable gift.

Sten and I sat with Dr. Summers as she went through paper after paper, our Data Review as it’s called.  We looked at the highlighted numbers that tell of the wonders within, of kidney’s and liver, of heart and marrow, of lungs and bones, of cells and antibodies.  Her marrow, so beat down by twenty-three month-long rounds of chemo, no longer produces almost any cells and yet, there is also no sign of her leukemia cells.  Her sinuses still harboring tenacious leukemia cells, many wiped out, but there is a clear remaining presence of this disease.  Her heart is not a normal heart, it gimps along but has made a marvelous recovery from the days ten months ago when it seemed right on the cusp of utter collapse.  In short, it is clear that there is no chance to cure her of her cancer without the most intense myeloblative assault possible, and while her body has incredible vulnerabilities due to all the ways it has been injured and weakened from her treatment, it has a chance to maybe, just maybe weather this storm.

Dr. Summers went through all the steps of the harrowing process before her, and of a plan, a collaboration of the Bone Marrow doctors, the Heart Failure cardiologists and the ICU staff.  This plan might look simple on paper but represents incredible teamwork on the part of these different specialties.   Today is not just a victory for our family, it is something for many people to be proud of, for it has taken the tenacity and compassion, and skill and brilliance of many folk to bring us to this point.  I thank in particular Dr. Marie Bleakley who has for so long been working behind the scenes to make this transplant an option for Allistaire, for Dr. Yuk Law and his wonderful team of cardiologists for constantly reconsidering Allistaire’s heart and how best to support it and build its strength, and for Dr. Todd Cooper along with Dr. Rebecca Gardner and Dr. Jessica Pollard, three incredible oncologists whose ability to straddle the research and clinical care of patients is impressive and have been directly responsible for helping to keep Allistaire’s cancer at bay for so long, enabling time for her heart to heal.  It is simply a gray and rainy day here in Seattle, Washington, the silhouette of evergreens, firs and hemlocks, and the delicate outlines of maples and madronnas, dark against the sky.  It is a quiet afternoon in the hospital, one day before Christmas, nothing to draw attention to how remarkable this day really is.

It has not been hard to call out to the Lord for help.  The words come easy and swiftly, “Help!  Hold onto me!  Hear my cry!  Mercy, mercy!”  But today I feel oddly mute, sitting in this quiet corner of a hallway looking out at a day turning to night.  What words?  What words Lord can I bring before you to say thank you?  I come before you empty-handed.  I sit down at your feet and just shake my head, in wonder, in awe, in delight. Thank you Lord.  Thank you Father, maker of the heavens and the earth and all that they contain.  I can say only, You are beautiful, I stand in awe of you, and I love you Lord, you are dear to me.

There have always been two fights, parallel, interwoven, side by side.  The fight of the flesh and the fight of the spirit.  Today is a moment of victory.  Today the door has been opened to transplant, of one more chance to eradicate the sickness within Allistaire that threatens her life.  Today marks the entrance to many more walls and doors and dangers, but it also marks the only possible way forward, the only hope for Allistaire’s life.  The fight of the spirit has always been that of Abraham, will I yield?  Will I lay all my treasure, all my hopes for life at the feet of the Lord and say, “This life of mine, this life of my child, so bound together, they are Yours.  You are God and all my days are for You to determine.  I yield.”  I enter the throne room of grace only because Christ has gone before me…He has gone before me that I am invited into the presence of the God of the Universe who actually loves me.  I am able to yield because He has so demonstrated His love for me in this, that He sent His only begotten Son, so that whoever believes in Him will not perish but have eternal life!  Perfect love drives out fear.  I can walk forward into the dark without fear, because no matter the days ahead, I know there is light on the horizon.  No matter the dangers, I cannot perish.  And should this transplant take Allistaire’s life instead of restore it, while we will miss her desperately, she will have been made whole and free.  She will live.

It is now Christmas Eve, a Christmas Eve like none I have ever known.  For the first time in my life I did not select a Christmas tree and delight in decorating it with Christmas music playing in the background.  I cannot think of a Christmas Eve that I have ever spent alone.  But for the first time in a very long time, I did not wake up sad.  We have a glimmer of hope.  The door to transplant has been opened.  Allistaire must make it 10 more days without getting sick or having some major issue come up in order to start the transplant process.  Next Monday she will begin the first of five “fractions” of focal radiation to the tumors/chloromas in her sinuses.  She will then have New Year’s Day and the weekend off before officially starting the transplant process on Monday, January 4th with TBI (Total Body Irradiation).  Once you begin the actual transplant process, there is no turning back.

Ten days.  In the scope of things, a short bit of time, but an enormous amount of time in which something could go wrong and this open door can go swinging shut again.  But tonight I go to bed with joy curled up in my heart, joy to have been allowed to walk this far forward and hope for more open doors.  Tomorrow is Christmas.  Tomorrow is the day we celebrate the birth of Jesus Christ.  Tomorrow is the day that changed everything.  The birth of Jesus Christ, Immanuel, God with us, is the basis for our hope that no matter the road before us, there will be beauty and redemption and life.

Roar

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IMG_3369Often music fills my ears, pushing back, pushing out the distraction of sounds around me, pulling my thoughts inward, attempts at gathering all the scatter into some sort of coalescing.  Today the gray-green waves of the Pacific roar relentlessly.  A sound of static unceasing, pleasing perhaps because of the immensity of its raw power, the deep core knowledge that this is water, this is the essence of the earth expressing itself, that monotony that is staggeringly beautiful, from which you can hardly turn away.  A line of dozens of surfers bob like black buoys waiting for some moment indiscernible to me, waiting to launch into those few seconds of thrill before the white ferocity takes them down.  Eight pelicans, one behind the other, skim the surface, effortlessly, lazily.

The still quiet of my home in Montana knows nothing of this clamor, just shocking liquid quiet punctuated here and there by bird song.  Perhaps in storm the land sings with ocean, clouds fill the valley making their way up the canyon with surprising swiftness, the wind proceeds them, the trees bending from the power and the constant rush of air through millions upon millions of evergreen branches, aspen leaves shuddering, flashing.  There is that thrill, that giddiness to witness such power, wondrous terror that nothing can stop what’s coming.  And so the waves reach for the shore, again and again, a longing never satiated.

I have wondered, would I like to live near the sea?  No, sea sounds too pretty, too small and timid and kind.  This is ocean.  This is a vastness and an infinitude to give the word some beginning of meaning.  This is force unyielding.  There is absolutely no letting up.  Would that sound haggard me?  Would its backdrop to every day and every action invigorate and calm or fatigue, cause restlessness, unsettledness?

This is our life, a pounding raw power that never lets up, is always, ever-present.  Cancer, and now heart failure too, have been the backdrop to every day and every action for nearly three and a half years.  The relentless static ever demanding to be heard threatens to swamp every view.  We dared to plan a trip to San Diego, a chance to finally get away and take a break.  Canceled plans, thwarted hopes, desires cut short – these have marked us.  But there he is, Sten on the beach below the hotel room, black wetsuit and blue board receiving instruction and soon to paddle out into that fierce green fray, lit now like liquid precious stone by sunlight breaking through clouds.  The contrast of breaking waves, white, so strangely satisfying.

Allistaire’s life, ever tenuous, overlays all thoughts, undergirds all visions of future.  All seems well.  You sleep in comfy bed, you eat tasty fish tacos and then there it is, because it has always been there but something causes you to tune into that roar, that relentless pounding of cancer like the wolf threatening to blow your house down.  The barbs of cancer puncture and sorrow seeps into those lacerated places, saturating the tissues.  Now there is another layer, another strata of sorrow, ever-present, silent but pounding, roaring its reality into unnoticed places.  Jens is dead.  We repeat it to ourselves in disbelief.  I saw his body laying there on the table, clothed in plaid flannel and dirty Carhartts, a most common image.  “They didn’t do his hair right,” Jo exclaims through tears, lovingly running her hand through his hair, “he never did it that way.”  A sad smile because Jens really never did do his hair, that’s why it doesn’t look right.  I held his hand and felt the shocking cold of his arm under the shirt.  I told myself, this is Jens, he is dead, he is dead but I could not fathom it, I cannot fathom it, I don’t know how to take it in!  We sit, we walk and there suddenly we are confronted with something that brings Jens rushing to our minds.  We stare at the amazing stretcher from the ambulance, awed by its engineering design and there is Jens.  We walk down the sidewalk and see the “corn hole game” and there is Jens.  We hear Dave Matthews in the restaurant and there is Jens.  Someone mispronounces Sten’s name, I correct and go through the list of the four brothers with the norwegian names and there is Jens.  I send out a group text to give an update on Allistaire and there is Jens.  My husband’s green jewel eyes fill again and again like pools, and there is Jens, Jens.  His sweet brother is gone, gone.  His name pounds through our hearts, punctuating our days endlessly.

I don’t know if I can live with this unceasing roar.  I feel desperate sometimes, wild with the desire to use my wee force to make this all stop, turn around, never come this way again.  We have no choice.  It is unyielding, it is a reaching, a groping that will never be satisfied, not in this life.  We will never again hear Jens’ voice in this life, nor see the green of His eyes, the eager excitement in his story telling, the silly contortions of his face to make us laugh, the gentle tug of pulling Jo into his protective warm chest, the wrestling with how to live out his days – his desire for satisfying work and play.  Oh dear Jensie, I cannot comprehend that you are really never again going to walk through the door.  Surely you are just away, or more likely, I am simply in Seattle with Allistaire and you will visit or I will see you when I get to come home again, you will walk through the door for one of our big family get togethers, arms loaded with tasty food.  You will join the circle of your brothers, beer in hand and I will stand back and take in with swelling satisfaction the joy of our family together, the hope of more little kids.  But I saved all the baby stuff.  I saved it for YOU!  For you and Jo.  I wanted to see those sweet little clothes that encircled the bulgie flesh of my two little girls, on your children.  I couldn’t wait to see what they’d be like.  I have imagined you Jens over and over, holding that new warm bundle of life in your arms in awed amazement, in wonder at what you and Jo had made, Jo next to you looking on, equally rejoicing in a new little life and seeing you as a dad.  For you Jens, were to be such a sweet, sweet dad, full of joy and play.  And it is not to be and what is Jo to do with those bags of clothes, of baby gear I thrust on her?

There now, just to the side, in parallel to the bright thread is now the dark.  Every remembrance is dual, joy and pain.  Jens is dead.  There is now no hoping, no imagining his future.  There is only sadness of what might have been.  Allistaire’s future remains ultimately unknown, though there is already cost, already deep gouges in her flesh that cannot be undone.  On a Wednesday we sat huddled together on the couch at Sten’s parent’s house, Jo and all her family, the Wilsons, and all of Jens’ family, we the Andersons.  We gathered to draw together tales of Jens, bright threads of his life intertwined with ours, sorrow and joy all tumbled together.  I sat on the edge with the phone shoved up against my thigh, ever aware of its presence, that its ring might suddenly clatter into this sacred space, slicing, and telling us what is to come.  Hours passed with no word from the doctors, despite knowing that surely by now her PET/CT was complete, results would be back and final results from her bone marrow biopsy should also return soon.

When our time of remembrance wrapped up, I shut myself in Lowell’s study and sat on the carpet as close to the heater as I could get, right up against the window, staring out, watching the slow consistent fall of snow.  The day before had begun with sun and sixty degrees and then the evening turned windy and fat flakes began to fall.  All through Wednesday the snow fell.  I sat with apprehension, knowing that at any moment the next twist in this journey with Allistaire would be revealed.  I sought to prepare my heart for what might come, to see the news as from the hand of Christ.  For I believe in God who determines all of our days before one of them has come to be, God who holds all of our life in His hands.

But it gets messy see?  I seek to follow my finite mind, a trail, a nubby fiber of reasoning and it all gets mucked up.  Did God cast Jens off that mountain?  Does God command the swirling rotation of electrons around the atom’s nucleus?  Is He Lord over atom binding to atom to form molecule, joining countless others to form the cell?  Does He declare, “here your proud waves halt?”  Does he pour forth the snow from its storehouses?  Does He count the number of hairs on my head?  Is He alert to my every rising up and laying down?  And what of another head sliced off by Isis, another body rotting away from Ebola?  Where is God in these moments?  Is He God?  What sort of God? Is it His prerogative to decide if and when cancer finally gnaws away Allistaire’s life?  Is He good?

The snow falls and I wonder.  What if it’s all just a bunch of crazy talk?  I’ve read the Bible, I know.  There are wild tales there.  Mysteries.  Paradoxes.  Seeming contradictions.  Countless questions left unanswered.  Answers that make me twist and arch in discomfort.  What if there’s no point at all, simply an incredible accumulation of mutations over eons resulting in a staggering fancy arrangement of atoms?  Who cares then?  What is Allistaire’s life?  Its loss is only sadness.  And what is sadness?  An illusion?  Another blind accomplishment of evolution, a component of survival of the fittest to get me to fight for the life of my offspring so my species can go on?  Is my love mere firing of neurons?  And what of Jens?  Was he just dust laying there on the table, soon to go back to join the rest of the earth to one day become a blade of grass, energy produced as the bonds of atoms burst in that furnace burning up his flesh, to go up and join the energy of clouds and wind and light?  Is Jens simply a molecule in the scale of the fish I will eat?  But where was Jens when that body lay on the table?  For he was not there.

The snow falls and I wonder and I feel sick to my stomach.  What is the point of all this, all this agony, if all she is is a bunch of atoms?  Let her go, let her go.  Walk away.  It doesn’t matter anyway.  It’s all illusion, all dream, all for what?  But I cannot go there, the very fibers of my being rail against that view.  I have seen beauty.  I have learned of kinase inhibitors, of heart muscles beating in unison, of atoms seeking electrons to at long last be at rest.  I have looked into Allistaire’s blue eyes flashing with delight.  Jens was no longer there, just beautiful, beloved dust.  I choose one unprovable over another.  I have seen the Lord.  I have heard His voice.  I stand with Job, having tasted a bit of loss, and I yield to the Lord and allow Him to instruct me.  The waves pound the shore.  The ocean speaks of the depths of God’s love.  The sky, as far as the east is from the west, speaks of His forgiveness.  Mountains fall into the sea at His voice, declaring His power.  The stars in all their vast infinitude, well, He calls them out one by one.  I smile.  My heart yields and I stand in awe and I know that when the day comes that I see Jens again, I will have first fallen on my face in adoration, in delighted submission to the God of the Universe who orders my days.

I walked down the hall into the kitchen where folks were about to head out to another family gathering in this week of sorrows, of mourning.  In that moment I was struck with the shocking suddenness and swiftness of Jens’ death, those sixty startling seconds.  I was struck by the contrast of that quick death with the nearly three and half years that Allistaire’s life has hung as by a mere thread, numerous times dangling over seeming insatiable jaws of death.  There is no leukemia in her marrow, I tell them.  No detectable cancer in her marrow and all of the six previous spots of solid leukemia as seen on PET/CT – gone.  There is only one small new spot of likely cancer.  A 1 cm brightness on the scan shows up on the outside of her left leg in the soft tissue.  The doctors are shocked.  With her ANC plummeting to zero, they assumed they would find a marrow packed with cancer.  But no.  Again her life is sustained against all probability.

After I return to Seattle, a biopsy confirms the spot in Allistaire’s leg is cancer.  Last Thursday, with giddy excitement, Allistaire was transported by a critical care ambulance to the University of Washington for a radiation simulation and consult with Dr. Ralph Ermoian.  Her leg may be deformed in terms of its long-term growth.  It may end up being shorter than the other but radiation should be effective at eradicating the cancer in this location.  Of course any part of the body exposed to radiation is also more likely to become cancerous down the line.  The barbs snag against our flesh, but we are well acquainted with such stings and give the warnings no attention.  Allistaire is set up in the CT machine to line up her leg and create a foam form around her leg and foot to keep it precisely in place during radiation.  Lines are drawn along her shin and upper thigh to align the lasers and two tiny jail-house style tattoos are etched into her knee, needle dipped in ink and scraped into tiny dots.  She screams and trembles in fear.  How many times have I had to tell her, “I know it hurts, I know it tastes yucky, I know it is scary, but we must do it, we must, or child, you will die.”

Radiation will begin on Wednesday when Sten and I return.  The hope is that Allistaire can make it through all of the ten days with no sedation.  She will be alone and must stay totally still for approximately five minutes “in the vault” each day, with several 30 seconds blasts of radiation.  It will be wonderful if she can do this without sedation.  While the three episodes of cardiac anesthesia (for her bone marrow biopsy, PET/CT and biopsy of leg) went great, sedation does pose its problems for the heart, specifically in reading the signs of how well the heart is functioning.  Each sedation brought lower blood pressures and an increased BNP.  Sedation requires no eating for long periods of time, impacts energy and can increase nausea.  The cardiologists feel that Allistaire is very ready to wean off of her Milrinone and have been eager to give it a try.  But sedation would confuse all the indicators of how well her heart and body would tolerate the wean.  They decided to turn down her Milrinone from .3 to .2 on Saturday and will keep it at this dose until after radiation on Wednesday.  If she does well without needing sedation to stay still during radiation and the wean of Milrinone appears to be going well, they will then turn her down to .1.  Today’s echo showed an ejection fraction of 31, down from the last one of 34 which was done from the prior at 38.  Each three of these echos the cardiologists say look essentially same, but boy what I wouldn’t give for better numbers.  Exciting times and nerve-wracking times.  Times of ever waiting.

If you walk in the Allistaire’s room, you will encounter a sweet-eyed five-year old girl bursting with joy and life and an insistent plea that you play with her.  What you see is the vibrant life of a girl we are so passionate to save, but there are happenings below the surface that constantly reveal another story.  She tested positive for C-Diff (Clostridium difficult), a bacteria in the gut, which has meant she’s been not only in ordinary contact isolation, but now contact enteric which means she hasn’t been able to leave her from for the last two weeks.  Her course of antibiotics wrapped up yesterday and if she remains symptom free, she will likely be allowed to roam the halls in a few days.    We hope she can fully get over this as sometimes C-Diff can be pesky and keep coming back.  Her other challenge is that her marrow has been incredibly slow to recover.  It finally did recover from her heavy-duty round of chemo that began in January but with this most recent round of chemo about six weeks ago, her ANC plummeted from nearly 1,700 down to 8.  The chemo she received, Azacitadine, is not supposed to be very count (marrow) suppressive but clearly her marrow has just been beaten down so relentlessly.  The major problems with this is that it means her blood counts aren’t recovering well enough on their own, resulting in continued red blood and platelet transfusions which tend to be hard on the heart (they are a big fluid increase and the fluid is heavy/dense).  Also, with such low white blood counts, she is far more vulnerable to infection of all kinds and it takes far longer to get over infections.  On top of it all, Allistaire still has cancer that needs to be warred against.  It has been six weeks since her last round of chemo began which means she’s two weeks past when she would normally begin another round of chemo.  The door to cancer cells has been left wide open.  She needs chemo.  She needs her marrow to recover.  It is all such a delicate balance and requires decisions to be made with no guarantee of outcome, just hope, hope.

The most recent bomb dropped on us unintentionally came when Dr. Ermoian talked to us about radiation.  He referenced the conversation he had with Dr. Gardner about the pros and cons of this focal radiation.  He mentioned that she said Allistaire would not be able to get TBI (Total Body Irradiation).  My mouth dropped.  My heart dropped.  Heat clamped down on the back of my neck.  Allistaire was not able to get TBI in her last transplant.  It is a core part of her hope to finally be cured of AML.  It can have long term serious consequences for the heart.  Oh God.  Here we are again – your most powerful weapons to kill the cancer are the very weapons that will in turn take your child’s life.  There are no letters to sound-out the agonizing wrathful rage and sorrow I feel at this plight.  I want my child to LIVE!!!!!  Then Dr. Ermoian says that it is not even clear how effective TBI is in the long run.  Dr. Gardner’s words from months ago come flooding my mind, “We like TBI so much we give it to babies.”  Her point was that they so believe in the worth of TBI that they even give it to infants – to infants!!!!  Do you know what TBI is?  I will quote again what the Fred Hutch website says, “it is like being near the epicenter of a nuclear blast.”  Your baby, my little girl, intentionally placed near the epicenter of a nuclear blast?!  Would you ever do that?  You would, you would if it was your only hope that your child might live.  But what wretched, agonizing choices, not really choices at all.  You may be weary of me asking you to give money to cancer research.  But I’m going to ask you again, if you haven’t already, would you consider giving to Obiliteride? Obiliteride is a fundraiser where 100% of donations go directly to cancer research at Fred Hutchinson Cancer Research.  Donate HERE.

I have been so thankful for Jo’s heart in the face of losing Jens.  My heart and faith have been encouraged as she has sought the Lord, His directing, His holding her up, His provision.  She has determined to be on the look out for what He will do, what He is up to.  Her fight has only just begun.  These days I have felt so weary, circling endlessly in this eddy, little to no seeming progress forward, no end in sight.  Mine has been a choosing to lift my eyes to Christ for three and half years.  Jo’s soaring spirit admonishes mine to look back over the bounty of God’s provision, of His faithfulness, of His words etched into my heart over these years.  And really, Jo’s fight to have eyes to see the Lord did not begin on April 11th with Jens’ body hurled over cliffs, nor did mine begin with Allistaire’s diagnosis.  No, long before these days, in long years past, a seed was planted and the root has gone down.  Our thirst for our Father, a scanning the horizon of our days for His face, came long before.  Do not wait for tragedy to seek His face.  Determine to seek Him now.  Thirst.  Hunger.  Yearn.  I believe lie when I live in wait for my circumstances to line up with my desires for how my life should look, waiting to truly live, to know rest and satisfaction.  The Lord IS my life!  The Lord IS my dwelling place, my home.  My Father is my sabbath rest now, now!

With Jo’s permission, I have copied below her words from Jens’ memorial service and a link to the video of the service HERE

“Jens.
 A single. Mighty. Syllable. Four letters that align so solidly beside one another, providing a foundation on which to build a life, develop character, cultivate relationship, grow ever more in integrity.

Jens.
 A name woven deep into the tapestry of my soul, your fibers reinforcing my own at their weakest places and adding depth and beauty to my places of strength.

Jens. Jens. Jens.
 I hear your name with each beat of your heart and with it I am transported, whisked away to cold, foggy early mornings in the Lamar Valley of Yellowstone, peering with anticipation through darkness as we wait for the first signs of dawn to show itself. Another heartbeat and I sit in the passenger seat of the 4-Runner as we bounce along dirt roads of Montana, nowhere to be but right where we are. My heart beats again and I find us snuggled in the tent perched high in the mountains, your face lit up as clear as day with each bolt of lightning that cracks above us, your eyes gleaming, awed by the display of power and beauty of our God. Another thump of my heart and I look over my shoulder to see you flex your strength against the waters, navigating the raft down the river or the canoe through the lake, you tirelessly paddle and steer as you smile back at me. My heart beats and we wake up and our eyes meet – we both smirk and shake our heads in wonder of the ball of black and white fur that so masterfully weaseled his way between us in the night – Peyto Dog was ever faithful in keeping tabs on his pack, even as he slumbered. Another beat and you’re making popcorn, pouring copious amounts of butter over the top. The next beat sends me to the garage where I serve as your third and fourth hands as you skillfully craft another beautiful wooden piece with those rough, weathered, hard-working Yensie hands. Another beat and we’re gathered around the table at your parent’s house, everyone talks and eats and talks some more. I find you on the couch or in the hammock reading, another Ivan Doig book down, another rich classic finished. I find myself on skis, skinning up a glistening, iridescent blanket of snow off the Teton Pass, following you and Peyto Dog up, up, up… and surfing the deeps back down again. I see you crawling around endlessly on your hands and knees, a thick furry blanket over your back as you delight Allistaire with your bear grunts and tickles. I walk around beside you around the park at night in the cold, your big red hat covering your head, every now and then a wisp of smoke rises as you puff your pipe. I find you lying on your back, head in a cupboard, fixing a leaking pipe, repairing the garbage disposal, troubleshooting the dishwasher that’s on the fritz. You come to bed late the night before a backcountry venture, waxing skis, ensuring you’ve packed appropriately, pouring over weather forecasts, condition reports, and the next day’s terrain on google earth just one more time before you rest. Another heartbeat and you‘re in your fleece trout pajamas being the goofy guy I so love, making up silly dance moves and striking poses, all to see my face light up and hear laughter pour out. Another beat and we’re sitting around the fire, watching for hours as the embers dance their way to the inky, star-studded sky. I blink and the night sky is still there, but the dancing embers have been replaced by the mesmerizing green + gold + white dance of the Northern Lights in Norway…

These heartbeats and moments in time continue on and on and on, filling me with memory of you. Other heartbeats are shocking, excruciatingly painful, visions of what could have been, working through the complexities and beauties of this life as we would have grown older together… these beats are unavoidable and meaningful, our unfulfilled dreams that will hang in the balance.

I press my ear to your chest, hoping to hear and feel our heartbeats align. Yours is a mighty, sure rhythm, the metronome stomping out a rhythm for your life. Oh how I marveled at it… this steady beat was at the center of all other creative rhythms you so incredibly pounded out – whether on pots and pans as a young boy, the steering wheel on road trips, the drum set in the northeast corner of the house, or as you poured out yourself on Sundays. Days you played at church I would intentionally show up after the music had already begun as I so loved pulling into that parking lot and stepping out of the car and hearing the only audible noise from inside filling air: Yens stomping out a rhythm on the bass drum, an extension of your wildly loving heart, pumping life through your body, through our family, through this community and beyond as you gave yourself with abandon to worship the Giver of all Life.

My heart has been privy to gentle whispers over the last decade of life… the first, before I knew you well, was God’s soft nudge and raising of my eyes to see you as he said, “That’s HIM”, something I never told you until 4 years later and we were husband and wife. My heart also endured a recurring dream over the last couple of years… I was always spared details about what took your life, but found myself widowed due to a ski accident, a burden that always fell to Peder to relay to me. I had this dream, this preview of life to be lived out without you by my side, and though it pained me so, it brought no anxiety. We would talk about it and you always refocused my vision, for you firmly believed that your task was to live fully vested in each day, deeply committed to taking responsibility for your actions to best preserve your life + the lives of others. The rest was up to the Giver of Life, who numbered your days before he fashioned your large cranium, wavy blonde locks, green eyes, and heart of gold in your momma’s womb… when this day came, it would matter not what you were doing, you would be ushered swiftly from this earthly realm to the feet of our Christ, our King. When the avalanche report came out detailing your accident and producing the exceptionally rare statement that there is, essentially, not a single explanation for what occurred on April 11th, my heart somehow found rest in that this was the day I had been prepared for over the last couple of years.

Your above and beyond efforts to be safe in the backcountry – from obtaining your Wilderness First Responder and Avy 1 certifications and rereading through your course materials a couple times every season to the so-called “over packing” of extra first aid and survival items – has preserved the lives of your brothers and friends over the years, and for that I am exceedingly grateful.

As my heart beats on, flashing through fifty-some treasured memories and painful dreams a minute, I have yet to hear it muster “Why God?? Why now? Why my Yens??” …Instead, all I hear is the persistent inquiry, with a tone of expectation, “What are you up to, my King?” For God, you still sit enthroned in my heart and in the heavens and beckon me to love you more deeply… and you even sweetened the deal, at Yens’ request, I’m sure, by gifting me with seasonal favorites of mine, heaps of spring snow followed by blue skies and radiant spring sun, both of which bring such promise of renewed LIFE. I’m on to you, Lord, I see you moving and shaking, and extending such Love, that same wild love that brought such vigor to the heart of my grizzly bear.

So… I implore you who listen in today, on behalf of my best friend, my love, my sweet honey: slow your selves long enough to picture the four chambered organ just beneath your sternum, a perfect + harmonious balance of electricity, chemistry, pressure, and tone, a gift with at, without any conscious effort on your behalf, send the gift of life throughout your body to sustain you. WONDER. MARVEL.

Jens’ big, giving, powerful heart beckons me and you to march onward in his wake, embracing the grace and freedom he wrapped his life around, to continue to stomp out that rhythm that we’ll hear the most loudly when the thunder clouds roll in and Yens takes to his drum set in the sky and makes a mighty ruckus with THE KING.

You are dearly loved, deeply revered, immensely missed by a greater group of people than you would have ever fathomed… I cannot wait to look you in the eyes again, see you smile, and fall on my face beside you in worship at the Throne of Grace.”  (Written by Jonell Anderson for her husband, Jens’, memorial on 4/18/15)IMG_3254IMG_3102 IMG_3109 IMG_3119 IMG_3163 IMG_3193 IMG_3200 IMG_3201 IMG_3202 IMG_3211 IMG_3227 IMG_3232 IMG_3234IMG_3237 IMG_3257 0419151428 SubstandardFullSizeRender SubstandardFullSizeRender-2 IMG_3292 IMG_3299 IMG_3320 IMG_3325 IMG_3322 IMG_3323 IMG_3331IMG_3335 IMG_3336 IMG_3337
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Worse before Better

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IMG_2628_2“I just feel like I could cry,” the nurse said dejectedly with arms slumped at her sides.  I totally knew what she meant.  All day I felt the strain of tears pressing against the back of my eyes, hot and insistent.  With one hand I held the X-ray plate, the other pressed up against her leg, the lead apron demanding the depression of my body.  Allistaire shook with pain and the multitudes of lines and agitating chunks of plastic surrounded her.  “I can’t do it,” she cried over and over.  “But you must, you must.”  A great sigh escaped my lips as the X-ray tech went to check if the picture was sufficient.  I hadn’t even known I had mistakenly allowed my weariness to see light until he said, “Almost done mom, just one more.”

I push back, flattening the words of the podcast on how X-rays work.  Attend to the task at hand.  Disregard the weight of the lead.  Ignore the little lead heart-shaped shield they put over her ovaries for the chest X-ray and then remove for the 2 abdominal X-rays, every single day.  Forget that a CT is worth 250 X-rays.  You did not hear the suggestion to ask your dentist if that X-ray is really necessary.  Grip your child and ignore her protests, the beads of sweat on her brow and her labored breath because the pain won’t let up.  Now quick, onto the other tortures, lift her up this way and that, change the sheet and pull the measuring tape under her back to measure the distention.  Press her hands and toes looking for capillary refill.  She is exhausted.  So unremitting is the pain that she hardly sleeps and the turmoil in her gut breaks through multiple times an hour.  The pain meds are increased, boluses accumulating and new meds added.

It feels like we’re going backwards, like the past three days have never happened.  Her chest rises and falls rapidly, heaving.  Back on goes the Milrinone.  Up go the pain meds.  Increase the flow of the cannula.  Ease the burden on that left ventricle of her little heart, beating so hard with terror and with fight.  After two days of granulocytes, the neutrophils display their fury against the invader.  Their number has increased from zero to almost five thousand on Wednesday and after the second dose they are over seven thousand.  Who can understand their mysterious wisdom, how they know where to rush in haste to battle, to mend, but it shows in the incredible increase in pain and all night she has been feverish despite regular doses of Tylenol.  I guess this is the worse before the better.  It’s hard to watch and strange to be forced into the paradox of cheering and gratitude when everyone around wants to throw up their hands – what more can we do for her pain?  How high can we go with this dose?  What will calm her anxious fears?  We’re not even living it, just bystanders, constantly racking our brains to come up with what combination of meds in what doses and at what times will finally yield some peace for her.

Fourteen hours in my too-tight pants and socks that agitate the ever dry skin of my legs.  So irresistible is the scratching that streaks of blood line my ankles and calves.  I listen to the message on the phone in Ron Don about some package that has been there for days, waiting for me to pick it up, to respond to its little incessant presence.  But it is too late and in the morning I will rush again to the hospital to relieve Sten from his long night so that he can go nap for several hours.  I unbutton my pants that have pressed into my gut, unrelenting all day.  Another pair down?  Is that 3 or 4 pairs now that are too tight?  Another bit of myself goes skittering away.  No chance to exercise and some strange, frustrating need to eat.  How can I want to eat when all this is happening and all I do is sit in a room hour after hour for days?  I resist long but at last succumb to the warm comfort of the coffee cupped between my palms.  The hot liquid soothes as it goes down my throat, like a hand brushing slow across the forehead.  My hope is in this caffeine that perhaps somehow it can push back against that wall of fatigue that even recent good nights of sleep seem incapable of diminishing.

“I was wondering if it might be possible to make an exception and have James be allowed to show me how to pump up my bike tire?”  Before the ICU slammed out all other life, I had been attempting small steps to be more prepared for Obliteride.  Last years ride was fun enough to make me want to do it again, but so brutal that I knew I would be fool to not be better prepared.  My sweet mother-in-law generously has allowed me to borrow her bike, a fantastic bike made more so by its perfect orange frame.  What a strange color, orange. So bright, almost cheery, but with some sort of fiery force and determination.  It is a color to be reckoned with.  And out of the corner of my eye I would see it sitting there, locked safely in the corner of the bike racks.  I bought bike shoes I’ve been too afraid to use.  Little goals – take a picture of the pedals to buy the cleats that fit.  Check.  Get on the bike, oh but wait, I can see how to go one direction with the gears but not the other.  Thank goodness for google that yields the answer.  Tentatively, I ride, but not before I have walked my bike across the intersection.  I get to the Burke Gilman trail and feel slightly more at ease but anticipate the other cyclists speeding by yelling, “on your left!” And I try to make myself as slim as possible and hug the far right edge to give room.

Sitting on my bed later, I laugh at how tender my tail bone is. How in the world did I ever, ever get on a bike and ride 55 miles without having ridden in a whole year?  What a fool.  What an idiot.  But wow, who was that person, what carried her all those miles?  How did she say no, no to the aid car?  Was it not the pain of her own little girl?  The pain she has endured?  What is my pain, ever, ever, compared to hers?  I wrestle with my own heart, weeping and yet berating, what is my pain when I have been given so much?  She is here with me.  Who am I to let the tears come when I always see the grey eyes here and the blue eyes and the green brown eyes of moms whose hands now lay empty on their laps?  I have bounty upon bounty.  I have been given so much time that might not have been.  Such an array of armament has been brought to bear against the invader.  I have been offered unfathomable privilege to walk so far down this road of war.  How many mothers across this globe at this very moment weep and weep with limp child, eyes glazed?  But there they sit, the abundance and the ragged gaping loss.

I got on my bike last summer because I had so much to be thankful for.  I got on my bike last summer because my heart had been run through with the blade countless times.  There was ecstatic joy and severing sorrow.  I make little goals and devise little plans to get back on that bike, to acquaint my rear with the weight of my frame.  I stop the man from getting his own bike and ask, will you help me with these shoes?  I don’t understand how they clip in?  And he gives kindness to me a stranger, and he offers knowledge and extends encouragement.  Another man delays his ride home to help me figure out how to pump up the tire with the special pin, unlike the girthy simplicity of a mountain bike.  But then I flatten the tire utterly, inept at my attempt and sit feeling myself deflated despite my best efforts.  Her comes Seth again, I recognize his shoes and beard.  Again I entreat him to help me and he graciously pumps up my tire and instructs.  “What you need is the foot pump they have up in the bike cage, it would work so much better.” “Yes, but that is for employees only, ” I respond.

“Can you make an exception and allow James to help me learn how to pump up my tire?” I ask Jen in the Department of Transportation.  My hope is that they’ll allow James to teach me some basics that will help prepare me and give me a little more confidence out on the bike.  “Sorry, it’s just for staff.  It’s a liability issue.”  Before I know it, I’m gulping down barely audible sobs. The tears stream and I apologize, saying I have no idea why I’m having this response to something so small.  Before I know it I’m telling her there are some people who live, like actually live, in this building and are trapped here for long periods of time. It’s incredibly hard to find a way to exercise and all I want is some help to be able to ride my bike.  My spirit slumped and suddenly swamping waves of sorrow weigh heavy, an unconscious overlap of sorrow upon sorrow.  Perhaps it had something to do with the combination of hearing about the dangers of X-rays when I had only the day before been doing a bit of research on TBI (Total Body Irradiation), being prompted by seeing Dr. Ermoin, her radiology oncologist.  “Did you know that the Fred Hutch website says that TBI “is equivalent to being close to the epicenter of a nuclear bomb blast”?  “It does not,” he says alarmed.  “Oh yes it does.”  Only weeks before I finished reading the book, “Unbroken,” and vivid descriptions of the nuclear bomb dropped on Hiroshima.

Hiroshima.  My child.  Allistaire standing there in the gray devastation, the silent ripping of radiation particles colliding with her flesh, tearing at the fiber of her being, DNA sliced into ribbons.

I am powerless to stop it.

I wear the lead apron to protect my own flesh while her’s must simply accept again and again and again the devastation.

The waistline of my pants cut in and again I shift, trying to find comfort.  All I want is some help with my bike pump.  I am cut off from my home, my husband, my family.  I’m asking for help.  I’m ever in the position of being in need, but I’m willing to reveal my neediness.  I’m trying here people.  I grasp for help in folks passing by, going to their bikes.  Will you help me?  This person helps with figuring out how the bike shoes clip in.  That man helps with how to inflate my tires.  The first man helps again when I stand frustrated before the flattened tire despite attempt after attempt to get it pumped up.

Cancer makes you feel powerless.  Cancer isolates.  It’s just a tiny cell but somehow it seems to dominate everything.  All the forces of man are brought to bear against it, yet how it seems to ever overcome every effort.  You accept the destruction.  You say yes to the horror because you have no other choice.  You embrace, you praise, you rejoice in the weapons, pressing the collateral damage back, back to the periphery.  And the shrapnel of cancer slashes anyone in its proximity.  There is the slice of jobs lost.   There the bleeding hole of your relationship with your other child.  Time, seasons, swings of dark and light, leaves dead and leaves budding, friends living their lives and you just gone, gone.   Those too tight pants bring rage, bring silent tears you reprimand yourself for having.

All I want is to take my flesh in hand and have it yield to me.  All I want is to get my tire pumped up so I can get away from this building for an hour and breathe cold air and see something other than walls.  All I want is to fit in my clothes and not want to tear them off of me at the end of another day.  All I want is to fight back.  All I want is to ride my bike so this August, I can enjoy Obliteride.  All I want is to feel the power of my quad pressing down the pedal, speeding me away from this constricted, suffocating fight and closer to a cure.

I must give thanks to the little Hiroshima that will transpire in the basement of the University of Washington Hospital within those lead lined walls and door.  I must give thanks to the poison that decimates my child’s immune system and has left her vulnerable to these ravaging bacteria.  I give thanks because these are the forces that have taken years to understand and develop.  I fall on my knees in gratitude for the hundred of thousands of hours of research scientists endeavoring to unravel the power of cancer.  I give thanks for three years of life for Allistaire that could have never been were it not for cancer research.

I mourn and I wail because of that most wretched Hiroshima unleashed on my child, that killer not only of cancer cells, but brain and bone and ovary and pituitary.  I fall on my knees in grief for the poison that distorts the DNA of her cells and heart and skin.

I grieve years lost and rejoice in years gained.  For they are one in the same.

Obliteride is a grieving and Obliteride is a rejoicing.  It is one in the same.

This August, I will once again have the joy and privilege to participate in Obliteride which is a bike ride to raise funds for Fred Hutchinson Cancer Research Center.  One hundred percent of funds raised go directly to cancer research.

I now know how to pump up my tire.  Soon I will know how to use my bike shoes.  My bum is already getting acclimated.  As I trudge up and down, up and down the eight flights of stairs in the Forrest stairwell morning after morning, as I ride down the trail, as I feel the burn of muscles being pushed to do more, to go further, I smile.  I will one day fit into my pants again.  More importantly, one day there will be no need for Hiroshimas or poison.  One day cancer research will have found the way to fully harness the immune system and stop cancer in its tracks, without the collateral damage.  Maybe one day we won’t need a cure, because we will have found how to prevent cancer.

I’m going to keep getting on my bike.  I’m going to get on my bike in anticipation of this summer’s Obliteride.  I am going to get on that bike every single year the Lord gives me life and there are muscles that can move.  For I have much to be thankful for.  I have much to grieve.

How about you?  Where has the shrapnel of cancer lacerated your life?  Where has cancer stolen from you and caused your heart to grieve?  Where has cancer unexpectedly given you so much rejoicing and thanks that you never knew before?

One of my favorite quotes is this:

“It is the greatest of all mistakes to do nothing when you can only do little.  Do what you can.”

If you would like to support me in raising money to fund cancer research click HERE

Help me OBLITERATE cancer!!!!

 

If you want to join our team for this summer’s Obliteride, we’d love it!  Emily, Jo and Lysen have once again committed to another year.  Leave a comment on the blog if you’d like to join our team and I will get right back to you.IMG_0481