Tag Archives: Fred Hutch

Cacophony

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IMG_2600Cacophony

Disparate.  Discordant.  Dissonance.

Turning this way and that, buffeted, battered.  Every angle met with contradictory force.  Joy, relief, yellow, bright splintered through with black, tears.  Flashes of bodies warm gone cold.  Flashes of giggles and bright eyes and stiff bodies born down hallways blocked from the eyes of the living.  Friends gone.  Gone.  Turning east, car seats empty.  We should NEVER go east without those faces in the rearview!

And I sit in sunny room, a palatial expanse, hum of the dryer and a sudden home, a grocery list and kitchen utensils and a recipe.  Sixteen months and the first meal cooked.  Not microwaved.  Not to-go styrofoam from a restaurant.  Ceramic plates.  Glasses.  Imagine: a refrigerator, a stove, a sink, a table, a child, all in the same room.  No flights of stairs to run up and down to heat up yet another hotdog.  For the first time in sixteen months, I sat in a cushy chair in the early morn, coffee and book in hand.  Wonderment.  Grandeur.

I walk out into that cool of night, crystalline stars blue and white, sparkling, not trite but truly, they sparkle.  How long since I looked at stars?  There, Orion’s belt.  Stars countable in a city sky.  I walk the 30 feet from the Ron Don Apartments solely for those patients discharged from bone marrow transplants, into Ron Don’s House A.  A familiar face and a story.  Kidney failure from a culprit whose name I know so well, drawing its milky substance into the syringe, three times every day, waking her every night at 2am.  “Allistaire, Allistaire.  Wake up sweets.  It’s time to take your med.”  Up she rises in the dark, half-asleep, trusting, mouth open.  And little John, little John.  “But I thought they went home?!” my voice a near quiet wail.  He bled out.  Just blood everywhere.  But, but…his platelets?  No, they were high enough.  His clotting factors then?  No.  No.  His cells just broke open.  He bled out.  Another family swept away east, empty-handed.

I stumble back through the night air, to my spacious abode, to my bald-headed girl.  Bright.  Cheery and spinning.  And I draw up the meds, again and again and she opens her mouth.  Trembling at the huge chunk of magnesium.  Shaking at the sight of that fish oil capsule.  But you must.  You must!  Press forward, rush at that pill before it gets the better of you.  Defy it.  Don’t look at it.  Don’t think about it.  Just do it.  Put it on your tongue and swallow!  Can you not hear the pounding of some monstrous hooves?  The breath hot and rancid on your neck?  The flying of rabid saliva.  Run Allistaire!  Run child, run!  We must keep running, I silently wail.  And the ashes of children, children whose voices I have known, ashes of eyes that once were bright, falling, falling all around us.  Ashes on our cheeks, ashes in our hair.

And upon the wall I’ve hung the art, the endless rainbows of color.  The cheery felt flags and the string of butterflies.  I’ve purchased bins, bright taffy pink bins with lids, little woven bins of lemonade yellow.  The lip glosses go here and the legos there.  Spread out the new Ikea rug across the cold faux-wood linoleum.  Set the picture frames upon the tables and cozy up to lamp light.

We escaped.  Maybe.  But who are we that we should be any different?  Who am I that I should be allowed to keep my child?  I watch the eyes of my friends.  I reach out and know they are impossibly far away.  They dwell on the other side of that gulf.  People say, “So, one-hundred days huh?  And then you get to go home, right?”  You see, I never imagined we would even make it to this day, this twenty-eighth day post transplant.  Allistaire’s done so well, she discharged from the hospital last Wednesday, February 3rd, in near record time.  A mere twenty-two days post transplant and after a short 46-day inpatient stay, Allistaire walked out of that hospital into the light and air of the outside world.  And I felt relief and awed shock.  How?  How did it go so well?  How was it so incredibly easy?

The very next day our out-patient life began with a full day of clinic appointments at SCCA (Seattle Cancer Care Alliance).  I hadn’t prepared my heart, just read the times dictated to me.  Go here, go there, at this time she’ll get her blood drawn, meet with the nutritionist, the social worker, the pharmacist, the nurse, the attending physician.  Yes sir, yes ma’am.  We do as we’re told, we open our mouth and move our feet to their instruction.  I’d forgotten the stares.  The stares of adults with cancer taking in the image of a small girl, bald like themselves.  A sort of horror and wonder in their eyes as they take in the smooth curve of her cranium, little blond hairs sporadic at her crown and nape, tubies peeking out from under her shirt.  I’d forgotten the sight of great swelling cheeks, cheeks that no obesity could fashion, cheeks like grapefruits, the effect of steroids unmistakable; steroids the primary defense against GVHD.  She seems to have made it out alive from transplant, but there it is, staring us in the face, the next beast threatening to devour and the perverse desire for it to come.  Yes, GVHD (Graft Versus Host Disease), you are welcome here, we invite you, come, come devour, come eat alive the ever-present threat of those mutated cells.  And I gag at the thought.  GVHD can kill.  Kill outright or kill by slowly stealing away quality of life.  And yet, not even radiation on par with a nuclear blast, not round after round of ravaging chemo is enough to trust those bastards are gone.

Walking in the doors of that building, going to the 6th floor for the transplant clinic…it all comes sweeping back, a flood of memory, the terror that rose, water to the neck.  Abrasive, the memories admonish, don’t let down your guard, don’t feel at rest, muscles stay tense, eyes alert, edgy.  When is it coming for her?  When will it strike again?  Only 50 days after her first transplant in June 2013, her cancer showed itself again.  Will we ever, ever be rid of it?  Will this crazy life ever end?  And you tell yourself to shut your mouth.  Your friend, whose hand and the cold hand of her daughter you held, tells you she would given anything to be in the fight again, just to have her little girl with her.  So don’t you dare weep for the ravages of your life, for she is with you!  She is here!  But will it ever end?  Oh God, must it end that way to end?  She had her Day +28 bone marrow test yesterday and her chimerism test to determine what percentage of her marrow is her own and what is donor.  How long might we enjoy this reprieve?

Dr. Cooper saw her in the hallway yesterday, and said, “She just looks SO good!”  Words echoed by many, many that have walked long on this journey with her.  Yes.  Her eyes sparkle with glee.  You should have seen the enamored wonder in her eyes as she spun in her new room, her own room in our Ron Don apartment.  “I was squealing getting into the car,” she tells me, “all my dreams are coming true!” she grins.  I cried when I walked in the door of our apartment for the first time, less than an hour after hugging Stevie’s parents, Keshia and Michael, and grandmother, Linda, goodbye, knowing they had one last stop before traveling east on I-90.  They were headed to pick up Stevie’s ashes.  And I was headed into a new apartment and post-transplant life.  Tears that they had a U-Haul trailer full of Stevie’s toys, toys to pack away in a storage unit, and I, toys to pull out of boxes to set up in anticipation of Allistaire’s joy.  Tears that we have this gift we’ve done nothing to deserve.  Tears that this present lull in no way guarantees we have escaped the same outcome.  Tears for a home that is not home.   So weak the prayers, “Oh God.”

Allistaire is doing wonderful so far.  She has clinic days at SCCA each Monday and Thursday, with frequent lab draws in-between due to the ongoing need for transfusions, especially platelets which are the last to recover.  She engrafted on Day +20 with an ANC of 2050.  Her ANC has since dropped due to no longer getting the GCSF (Granulocyte Colony Stimulating Factor) infusions, but today was 630.  Allistaire has not had an ANC that high for nearly a year and a half.  Her medications continue to be adjusted as drug levels are taken and electrolytes change.  She gets 35 doses of meds per day which include the immune suppressants tacrolimus, and mycophenolate mofetil (MMF), hydrocortisone to compensate for the insufficiency of her adrenal glands, acyclovir to protect against certain viruses, voriconazole to protect against fungus, dapsone to protect against pneuocystis, ursodial to protect her liver, fish-oil to reduce her high levels of triglycerides, vitamin D supplements and a multivitamin.  For her heart she takes hydralazine, isosorbide dinitrate, carvedilol, lasix, spirinolactone, magnesium supplements and Entresto.

Her higher ANC betrays the true weakness of her immune system.  Because her transplant wiped out her immune system, it also wiped out the immune effect of the vaccinations she has received, with the exception of chicken pox because that lives in the nerve cells.  It will take an entire year for her immune system to fully reconstitute.  Only then will she be able to get re-vaccinated, for the third time in her life.  For this reason, for one year post transplant she is not allowed to attend school nor any event or go to any location with a high density of folks.  We venture out with caution, at off times, mid-day, mid-week when we must go to the store.  She cannot dig in the dirt, cannot frolic in the grass, must avoid house plants and all sources of fungus.  Her food must be more carefully washed and cooked to avoid food born illnesses such as E. coli, Salmonella and Listeria.

We walk forward in hope, though it is not a bright and refreshing hope.  It is the hope of the hunted.  It is hope that there may still be a way through, though the dangers great.  It is a hope permanently stained with images of those who have fallen, images of tear-stained faces of friends, bodies lining the road behind.  It is a hope that feels a bit crazed and frantic, a panting from hard running.  It is a hope that yearns for a day when this fleeing may cease and a weapon will have been crafted that can be thrust deep into the heart of that beast, killing it forever.  For now, we strain forward, seeking to feel the warmth of sun on our faces, never taking one moment of life and bounty for granted.  My prayers are short.  “Thank you God.”  Thank you for this ice amazingly ever available in this freezer.  Thank you God that every time her platelets drop there are platelets ready to replace the empty space.  Thank you God for an oven to bake cookies in.  Thank you Father for that giddy joy she has as she places the chocolate chips in the pancakes.  Thank you God for the hope that we will see Solveig soon.  Thank you God that Allistaire is almost 6 years old.  Thank you that though we have been chased relentlessly for four years, her life has tripled from what it might have been.  Thank you God for every time I get to hear, “I love you Mommy.”

And I cry out to the Lord on behalf of those who have lost their little beloveds.  Oh, Lord.  Oh Lord.  Have compassion.  May your Spirit go out from you and dwell within those broken, bleeding hearts.  Comfort with the comfort that only You can yield.  And do not turn away from this ravaging, God!  Come quickly!  Bring an end to this brokenness.  Redeem the loss.  Raise the dead.  Bind up the wounds.  Put an end to the curse and bless.  Wipe away the tears.  We are expectant for You!

And Father, though we run as those chased, let us simultaneously find our rest in You, our only home, our very life.  May times of refreshing come to my heart, dependent on You, not on changed circumstances.

My friend lost her baby girl the day before she was to be induced.  She had to push out a child not breathing.  Only months later she learned she had cancer, at just about the same time she found out another child was on her way.  Now there is a bright, smiling baby girl in her life and tomorrow she finds out if her cancer has stayed at bay.  Her longing is that she might be singing when the evening comes, no matter the results.

Yes Lord.  May we sing out, even as tears stream down, let us bow low and worship and fix our eyes on You.

(Got a call yesterday evening with Allistaire’s bone marrow biopsy results…0% detectable leukemia by Flow Cytometry and 100% Donor Chimerisms in both the peripheral blood and marrow – this means only Sten’s/Donor’s cells are detectable and nothing of Allistaire’s old immune system, including her cancer, is detectable at this point.  What an incredible grace of God.  Thank you.  Thank You Lord!)

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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

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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.

Brewing Storm

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IMG_2054How many times has my Father extended His arm out over the waters and invited me to walk – to step out on shifting waters, to look Him in the eye and trust Him, to put one foot in front of the other and put all my hope in Him? How many days have the winds buffeted and the sky seemed angry and black?

I wrote the words above on June 18, 2013.  They continue to ring so true.  I was prompted to look back at that day because Sten and I received an uncommon, hauntingly beautiful gift today.  A strange message in broken English came to us from across the world.  Allistaire’s bone marrow donor from her transplant in 2013 reached out to us, seeking to make yet another connection with us, this time in voice, in words, no longer disembodied.   Katja.  Katja.  A beautiful name.  I say it again and again, like savoring a morsel, I smile as I say it, gleeful, amazed, surprised, utterly delighted.  This is the woman who gave of her bone marrow to my child, who saved the life of Allistaire, whose very cells have divided over and over and over and over for two and a half years to sustain my girl’s life.  SHE’s REAL!!!  I mean I knew that, of course she was real, is real, but somehow, to know her name, it is gift.  And it is gift to have even the smallest means of bowing low before her, to show her honor, to convey my thanks, to cry big silent tears of joy and gratitude for her compassion, her generosity, her selflessness to give, to give to a stranger.

Thank you Katja.

The timing of her contacting us is interesting.  I’ve actually been thinking about her, about Katja, this woman who was born in the same small span of time as myself.  She and I, two women who have the great mysterious privilege of giving life to Allistaire.  You see, if Allistaire is able to move forward to this second transplant, not only will all of Allistaire’s cancer cells hopefully be annihilated, so will Katja’s cells.  It grieves my heart.  I will mourn the death of those life-giving cells, those cells, those bits of Katja that have done so much for Allistaire – those cells that have protected her from bleeding out by making platelets and the white blood cells to fight infection and those most precious red blood cells who carry oxygen throughout her flesh.  I will be cheering on the radiation and the chemotherapy and praying for their utter conquest of her marrow and yet, just as with her first transplant, there will also be loss, also be grieving.

The way forward is still unknown, but millimeter by millimeter we take ground.  The week seemed to begin on Tuesday with her brain MRI.  Later in the afternoon we were in clinic so she could get platelets and I was eager to hear from Dr. Cooper, hoping to hear that the chloromas were vastly reduced yet again and she was considered in a good position to move forward with transplant.  Allistaire was busy with the Childlife Specialists, Callie and Jen, pressing her inked hands against great glass orbs.  Having watched Lilly’s hands being placed against those same glass ornaments, I asked Callie to help us with this now, to preserve a bit of Allistaire, for the possible times ahead when it may seem hard to believe she ever existed, when memories of her could blur and fade.  It was a uniquely painful and bittersweet moment, watching her joy at doing crafts and yet knowing in my heart why this was happening, knowing what very well may come true.  It was in the midst of her cheerful chatter with Callie and Jen that Dr. Cooper came to the door.  “Is it good?  Just tell me…”  He raises his shoulders and lets them slump back down.

The two chloromas in her sinus maxillary on the right and left have decreased both in dimension and bulk but there is a small new 1 X .8 cm chloroma on the right side.  All of a sudden, when I least expected it, I yet again had the wind knocked out of me.  I shake my head in bafflement, only sort of hearing as Dr. Cooper voices the possibility that this could take the option of transplant off the table.  “This could be considered progressive disease…”  But, but, but this is the nature of chloromas.  This is exactly the sort of disease she’s had for the past three years.  But, but, but…I called Sten trying to explain this news, gasping at the thought of there being nothing left.  I mean, there are other trials, but we can’t just keep doing this forever.  An internal conflict insures, the question of how far do you push, just how far do you go?  Is stopping giving up?  Lord have mercy.  And what does it look like to have mercy?  Is mercy finding a way forward, a tiny crack in the granite for the water to seep through?  Is mercy a closed-door, a ceasing from struggle?  But how?  Ever how?  How do I take this girl home to die and what would death look like?  Because I know I don’t want it to look like those chloromas taking over her face, stealing her away right in front of me, agonizing pain.  Oh God, Oh God, I’m going down and all the world blurs with tears and the scaffolding of my flesh feels like it’s giving way.  Just don’t give her red blood I think, my breath quick, she’ll just get tired, she’ll just sleep.  Yes, that seems the best way, I think, and I walk back to the room, to the room where my fluffy-haired, bright blue-eyed girl smiles her cooky little grin.

My alarm goes off.  It’s Thursday morning and I lie eyes wide in the dark, a heaviness on my chest.  Oh God.  Oh God, what will this day hold?  I think of those nights when I would go to bed crying, wake up crying, having to find a way to just will my legs out of the bed, to force my feet upon the floor, to rise and begin and face whatever might come my way.  A luxury car commercial playing recently, quotes what is often credited to Abraham Lincoln, “The best way to predict the future, is to create it.”  Hah!  I laugh a sad weak laugh.  Wouldn’t that be nice?  It has become abundantly clear how little I can do to create the future I long for.  The Christmas songs, taunt and ask, “All I Want for Christmas…”  I cry in the store as the song cheerfully plays on.  All I want for Christmas?  All I want is for my little girl to live, to not die, to not be ravaged and stolen away.

In the dark, I walk through the room to the shower, careful to be quiet and not wake Allistaire who is ever no less than 10 feet from me.  I pray, ineloquent, little fits of words, bits and bursts as I rinse out the shampoo, seeking the Lord, turning toward Him, longing to align my heart with His.  In weakness and fatigue, falling before Him, not crawling and quaking in fear, but fear of the Lord, a fear that says, Yes, Yes, you are God and I am not.  You are God and you are my dwelling place, you invite me into the shelter of your wing.  I am weary, I am frail and broken and you draw me to Yourself, you entreat me to come, and I have no strength to walk and somehow my Jesus comes and carries me to the throne and I say, You, You are God and I am not.  That is the sum of my prayers.  You Oh God have created the future, all of it, the past, the present, the future.  You know what this day holds and it is all swept up into the beauty of what you are creating.  In You, and You alone I trust most high God, who has come down low to me.  You have demonstrated Your grace, Your compassion, Your tenderness and I rest.  You are the place, the person in whom I choose to trust.  You know this day, Lord, I do not.  It is your day Lord.  She is your child God.  Oh Lord, do not let me go.

My heart slowed as I saw that Dr. Bleakley would be joining our meeting, The Arrival Conference, with Dr. Laurie Burroughs leading our time.  Did her presence mean it was all over?  Was she here to help convey the hard words that they had decided not to allow Allistaire this transplant because of the new chloroma?  It soon became clear that we were marching forward, that this chloroma had in fact caused them to push forward the process to begin the conditioning a week earlier.  Dr. Bleakley was there to provide continuity.  Dr. Bleakley said that prior to getting these most recent MRI results, she was still considering whether or not a reduced intensity conditioning transplant might be better for Allistaire, given her heart.  She said that this chloroma had made it clear that nothing less than the full force of all they could throw at her had even a chance of ridding her of this disease.

“You know Jai, most transplant centers would not do this transplant.  There are doctors on our service that do not think we should do it.  There are parents who would choose not to.”  The night before I had read through the protocol for the transplant and all the details of what could go wrong, of side effects.  There were of course the usual side effects – nausea, vomiting, temporary hair loss, fatigue, weakness/loss of strength, fever, loss of appetite, diarrhea, increased risk of infection.  But then,words taking up no more space than the others, yet whose weight left me gasping – sterility, brain injury, kidney failure, liver failure, heart failure, multi-organ failure, death.  Death.

“[Your child] has been diagnosed as having a fatal malignant disease that does not respond to conventional therapy.  Although remission may be able to be obtained for some length of time in a few cases, relapse will most likely occur after a short while.”

Those two faces, faces of two women I have come to know over the years, women in whom I have placed my trust, women who are brilliant, women with compassionate hearts, they tell me “not only is there a chance Allistaire could die in transplant, but there is a very good chance that she will die in transplant…Are you sure you want to do this?”

It feels as if I have always known this, as though all my life I have known about bone marrow transplants and the reality that they are brutal on the body and can kill in an effort to cure.  My heart pauses, looking out over the distance, looking out to the horizon, heart heavy and I say, “Yes.”  Yes, because we know what will come for her if we don’t try this.  There is nothing left.  We have at long last come down to this last great undertaking.  I had an image in my mind the other day of Allistaire grown, crying and angry, demanding to know why I had not just let her die.  I was driving east, away from Seattle, to stand witness at Lilly’s memorial, to extend my hand and heart in solidarity with Heather.  Sometimes I look at Allistaire and it seems impossible to me that she has cancer.  Does she really have something inside her that will rapidly kill her were it not for the enormity of this intervening?  But she looks so alive.  But I love her too much.  But she is just unfurling all the more, day after day, new delights in coming to know who she is, who she will become.  But, but…but all my love and all my yearning for her, all my delight of looking into her eyes and hearing her voice, it is not enough, I can not stop what will be.

Yes.  Yes, I understand the risks.  Sten and I choose to walk forward, knowing it is entirely possible that we are entering into the last weeks with her.  I have to stop myself from thinking it every time I look at her, every time I delight in the sweet curve of her cheeks, the swoop of her nose, her hilarious mannerisms, her perpetual coloring of rainbows and inability not to dance at even the hint of music, of her constant tip-toe walking, her goofy laugh, her tender face that tells me, I love you mommy.  I just feel my whole heart shattering in sorrow, my esophagus tightening, threading to cut off my breath.  Every joy feels like a double-edged sword, every joy a cutting, the threat of severing.  Somehow God just help me to live out this day, to take joy in this day and not let the possibility of tomorrow’s sorrow steal away today.

We left SCCA (Seattle Cancer Care Alliance) Thursday afternoon with the plan to go to clinic at Seattle Children’s later that day in anticipation of her bone marrow test on Friday that would also include a LP (Lumbar Puncture) to test for leukemia in her spinal fluid and Intrathecal Chemo (chemo that goes directly into her spinal cord).  But upon entering our room at Ron Don she felt warm and with dread I took her temperature.  101.6 degrees, a clear-cut fever.  Along with the fever, there was a strange rash of red spots on her arms and legs.  And in a flash any remaining days at Ron Don were swept away.  We went to the ER where blood cultures were drawn and antibiotics started.  The next day a bloodstream bacterial infection was confirmed, eventually the bacteria being pinned down to a common bacteria on human skin, Staphylococcus Epidermidis.  Vancomycin was started and eventually, Vanco-locks as well, which means the nurse inserts vancomycin directly into each of the two lumens of her Hickman Catheter and allows it to sit for eight hours at a time with the goal of ridding the actual plastic tubing of the bacteria, given it’s propensity to grow on such material.

Fortunately, the mysterious red spots went away and she has had no further fevers.  She’s feeling great and doing well despite now being stuck in the hospital.  We have a sweet room, Forest A Level 7 room 219, a room that looks out over the western end of Lake Washington, that allows a view of the sunset and the Space Needle.  If all goes well, she will be in this room for the next few months, with the earliest departure being sometime in February.  If all goes well, she will begin focal radiation to the chloromas in her sinuses on Monday, December 28th and continue through the 31st.  TBI, which is considered the first segment of conditioning, would begin on Monday, January 4th and wrap up the two-a-day sessions on the 7th.  Next would come the chemotherapy, Fludarabine, for three days.  A “day of rest,” and then the actual transplant/infusion of donor cells on Tuesday, January 12th.

This all feels so far off and yet it is coming in fast, just as I want the days to slow that I might savor.  She has to remain in the hospital the next two weeks in order to complete this course of Vancomycin which ends up coinciding with beginning the actual transplant process.  The upside to being in the hospital is that we are able to start tackling the tests and tasks that remain to get her ready for transplant.  Three major tests have already been completed: the brain MRI, the bone marrow biopsy and aspirate and the chest CT.  The chest CT yesterday showed that the COP (Cryptogenic Organizing Pneumonia) in her lungs has improved, with one spot being completely gone and the others reducing in size.  This is a huge relief, as the requirement to move forward was stable or improved disease in her lungs.  We should get bone marrow results by the end of tomorrow or Tuesday at the latest.

Tomorrow is a very, very big day.  Tomorrow Allistaire will have an echocardiogram and EKG, which feels like her biggest hurdle.  The doctors again want to see stable cardiac function.  While her BNP (measure of heart distress) had gone down from about 800 to the low 400s, it jumped back up as seen on Saturday morning’s labs.  Dr. Kemna explained that a small change in the body and/or heart can produce a relatively big change in the value of the BNP.  Dr. Kemna thought Allistaire looked great when she examined her on Saturday and was delighted to report she felt very warm and well profused.  So we shall see soon enough.  Tomorrow Allistaire will also have a nasal swab, nasal flush and a rectal swab all to test for a variety of viruses.  Some of the tests would block her from moving forward and others would simply be for the sake of information gathering.  She will also see the dentist to get a baseline of her oral health.  Sarah, the physical therapist, will do an evaluation of her range of motion as this can be impacted by the transplant process of being in the hospital and by GVHD (Graft Versus Host Disease).

Thank you to so many of you who have continued to walk faithfully with us on this long road.  Thank you for you for prayers and encouragement and Starbucks cards and meals and just for caring, for remembering us.

Tonight our little family of four dwells under three separate roofs.  Solveig may never see her sister again.  Nobody wants me to say this out loud, nobody can bear to hear those words.  I have to live the realistic possibility of those words.  I don’t know how many days I have left with Allistaire.  But then again, I have never ever known that.  I cannot predict the future.  But I rest in the One who has created it.  Father, oh Father, have mercy, have mercy, mercy according to your perfect love and perfect wisdom.

If you would like to offer the amazing gift of life to someone as Katja did for Allistaire, sign up to be a bone marrow donor HERE

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Batten Down the Hatches

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DSCN4622 DSCN4627 DSCN4629IMG_1920Batten Down the Hatches
:  Nautical Term – To secure a ship’s hatch-tarpaulins, especially when rough weather is expected

From hence forth, Allistaire is in lock-down mode.  I will not allow her to go anywhere other than the hospital and our room at Ron Don.  When she’s in the hospital she’ll be wearing a mask.  The countdown has begun.

Last Friday I received THE call.  The transplant coordinator called me with dates, actual “written on the books” dates for Allistaire’s transplant.  Earlier that morning, Dr. Bleakley relayed to me that the pulmonologist at SCCA who cares for adult patients had reviewed all of Allistaire’s lung CTs and the testing results from her biopsy.  He concluded that she does indeed have Cryptogenic Organizing Pneumonia (COP).  Dr. Madtes felt confident that the testing had conclusively ruled out the possibility of leukemia, fungus and bacteria.  He said that while it is not common to ever have COP and especially rare to have it more than a year post-transplant, he has seen it this far out.  Also, the location of the nodules in her lungs he said are classic for COP.  The treatment for COP is steroids which Allistaire began last Wednesday, December 2nd.  He expects the steroids to be successful in clearing the infection and does not think it should require any delay going into transplant.

Thus we are able to move forward with her transplant.  Next Wednesday, December 16th, she will be officially transferred into the care of Seattle Cancer Care Alliance and will begin a slew of testing that will take place over the course of the following two weeks.  We do not have all the details of her schedule, yet the various tests will include a lot of blood tests, lung CT, PET/CT of her whole body, brain MRI, likely another echocardiogram and EKG, bone marrow aspirate and biopsy, and of course physical exams.  The majority of these tests would be conducted anyway given that she is coming to the end of this round of chemo at the end of the month, but everything will be especially scrutinized in light of her ability to endure a transplant and the state of her disease which impacts the success of the transplant.  All the testing will be wrapped up and conveyed to us in a “Data Review Conference,” on Thursday, December 31st.

While she is cleared to begin this process, this is really a process of final determination if she can have a transplant, it is not at all a guarantee of transplant.  We all think she’s in a good place to move forward, but all this testing will verify that.  This will be a very busy time full of appointments and sedations.  Honestly, there are still a hundred thousand things that could stop us in our tracks.  Last week Allistaire’s creatine level jumped to .9 which indicates the high possibility of kidney damage if you can’t turn it around.  Because of the limitations of her heart, she was admitted to run fluids at a lower rate to help flush out the rising phosphorus, potassium and uric acid that were building up and putting stress on her kidneys.  A day in the hospital helped her labs return to normal but this is just one example of how serious issues can arise out of the blue.  The most immediate concern is her heart as her BNP (measurement of heart distress) was quite high last week at 824 (normal is 0-90).  This lab was drawn the same morning that she had an echocardiogram that showed stable cardiac function and an ejection fraction of 43 and a shortening fraction of 21.  The heart failure team think the high BNP was most likely due to getting fluids the day before, but this was a red flag for the BMT (Bone Marrow Transplant) team.  Unfortunately today, it was still just as high at 830.  I don’t know what’s going on but it sure is concerning.  If it were to continue to trend up, again we could be stopped from moving forward.

Really and truly, there is no guarantee of transplant until the day conditioning starts.  For those unfamiliar with bone marrow transplant, in general the process begins with annihilating the marrow and trying to eradicate the body of cancer cells.  This first part of the process is known as “conditioning.”  Sounds nice huh?  It’s anything but nice.  I’ll give more details another time, but suffice it to say, there is almost nothing more brutal you can do to a body than this full intensity “conditioning.”  Conditioning is scheduled to begin on January 4th, with four days of “boost radiation,” to Allistaire’s sinuses where these awful chloromas/tumors have been in her face.  She will then get the weekend off and have TBI (Total Body Irradiation) twice a day January 11-14th.  Then comes the chemo, Fludarabine, January 15 – 17th.  On the 18th she will have a “day of rest,” and the 19th will be the actual day of transplant when she receives the infusion of donor cells.

The transplant coordinator continued on with giving me dates, dates of approximately how long she’d be in the hospital and how long she’d have to stay in Seattle before she goes home.  I mentally clamped my hands over my ears at this point.  It’s just too much to consider.  I can’t even look at the possibility of going home.  I can only focus on the hope of getting her to transplant.  After so many, many disappointments and cancelled plans and hopes, I rarely look more than a few weeks into the future.  The cardiology scheduler called the other day to set up appointments for January and February and I laughed out loud, a sad, cynical laugh – I cannot even anticipate what this Friday holds, much less a month of two from now.  Allistaire has been talking more and more lately about how excited she is about transplant because it means she can go home after that.  I am totally honest with her and tell her we don’t even know if she’ll be able to get her transplant, whether or not she’ll survive the transplant and even more so whether or not it will work.

The truth is I feel beat down these days.  These holidays are driving me sort of crazy.  I love the delight they bring Allistaire as we decorated her little pink Christmas tree with lights and ornaments and listening to Christmas music.  But everywhere I turn the holidays are just screaming in my face how far from normal our lives are, how far from the life I long for.  Today has been a hard day.  Yesterday evening I talked with my friend whose daughter is here for her one year post-transplant follow-up and her bone marrow test confirmed relapse as they feared.  They are scrambling for options.  I also found out last night that our sweet little AML friend, Ron Don neighbor and fellow Montanan has blasts in her blood and numerous chloromas.  Stevie is only four and has the cutest voice you can imagine.  This is confirmation that this round of chemo did not work.  Like Allistaire, she is trying to get to a second transplant.  I keep imagining how hard this week is for Heather as she and John prepare for Lilly’s memorial service on Saturday.  Allistaire’s high BNP just makes no sense to me and terrifies me that issues with her heart could show up and this whole transplant attempt could come crashing down.  She cannot just keep getting Mylotarg.  This feels like her one last shot.  Everywhere I turn, disaster, desperation, deepest wells of sorrow.

I was listening to a song today that had as its core the verse John 15:13 which says that, “Greater love has no one than this: to lay down one’s life for one’s friends.”  Then Romans 8:16-17 came to mind where it says, “The Spirit himself testifies with our spirit that we are God’s children.  Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.”  Why did Christ suffer?  Why did God ever take on the form of a frail, temporal human in the first place?  Was it not all because He loves us?  Because His heart is moved by compassion and He longs to be in relationship with us?  He came in the form of man as Jesus Christ in order that through His suffering, His death, we have a way into eternal life with Him.  His whole life and His death were for the express purpose of being light to the world, to display and demonstrate in action the love and holiness of God, all so that we would see, that our hearts would turn to Him and receive life!

Christ suffered while He was alive and He suffered ultimately on the cross.  He demonstrated ultimate love by laying down His life for those He longed to call friends.  I am not being persecuted for my faith in Christ and yet everywhere I turn, I cry out, “Lord God!  It is all a mess!  It is all ragged and torn and in disarray.  This is NOT THE LIFE I WANTED!!!”  I want to rage at Him.  And then I bend my knee, my face to the ground.  “You are God and I am not.  Your ways are higher than my ways.  You are other!”  Who am I to say what my life should look like?  Is not all my life, all my life to be a reflection of the wildly compassionate heart of God?  Who am I to say how He is best displayed? Nothing in my life resembles the sort of life I thought I would have, the life I envisioned for myself.  There is nothing here to display on Pinterest.  When I survey my life, it hits none of the bullet points I wanted.

But then, then I must get down low, I must crane my neck up scanning the night sky and ask, what really, really do I want out of this life.  Hasn’t it always been about the two commands, to love the Lord my God with all my heart, soul and spirit – with all my strength.  And to love my neighbor as myself.  If this is what I claim my life is about then guess what?  This is exactly a perfect place for my life to be.  Every single day, from the moment I wake up until I finally fall asleep is a constant seeking after the Lord, constant calling out to Him, constant praising Him, constant wrestling with Him.  This is what a broken life for a child of God accomplishes: an abiding, I in Him and He in me.  And He has allowed me to walk into terrifying dark and made Himself known to me there, here, that I in turn might share His comfort with others in this black place.  Because it is so black, so utterly dark, it challenges one’s very core and all that is connected.  I am able to love those in the dark in a way I never could have before entering the darkness myself.  Sometimes the pain of this place is blinding and consumes the view.  Sometimes the pain seems to ring through every last nerve, the tips of your fingers searing with hot sorrow.  I seek to mourn with those who mourn and rejoice with those who rejoice.

Sometimes I scream, scream, scream in the car. Scream so hard my throat is raw.  There are no words for the depth of this tearing.  Father, you have brought me into this land I never sought, a land I have despised, a land that made me cringe and hoped I would never have to know anything about.  It is a barren land, ugly and dangerous.  And yet, in this land I have seen your face, heard your voice; I have begun to taste of what it is to walk with you.  In this land I have been able to offer my hand to those who also travel this bleak road.  The treasures of my life will get me no where with a retirement plan, they will not draw people to me because of my accomplishments, my travels, my career, my beautiful house, my knowledge of politics, world events…My bounty is only in the Lord and to the eyes of this world it looks empty, flimsy, small.  But what if this mess of a life enables me to enter into places to love?  What if this is the way I share in the suffering of Christ who laid down His life for His friends?  How can I say no to that?

As I sit here, ever trapped in Ron Don, a few short weeks before we will know if Allistaire’s life opens forward toward transplant or gets shut down to a remaining few more months, I reflect on the past four years.  Yesterday marked four years exactly from the day Sten and I sat down in a hospital room with Dr. Gardner and Dr. Tarlock to be told that Allistaire had Acute Myeloid Leukemia.  In the midst of incredible sorrow, of feeling utterly overwhelmed, the Lord spoke to me in the quiet – “Be expectant, be on the look out for what I will do.”  Had I known that day what the coming years ahead would hold, I could never have imagined how I would endure.  But He told me that He promises bounty.  I have never taken that to mean a guarantee of Allistaire’s life.  I fix my eyes on Christ – on God who is other, who is eternal.  He may grant us Allistaire’s life and He may not but I put my hope in the fulfillment of His promises to redeem and make new.

The intensity mounts, the ringing tension builds up and up and up.  I long for resolution.  I long for a day that I get to tell Allistaire we can go home, not to die, but to live.  How glorious such a thing would be!  But today we must dwell in this day, this gray flat Friday afternoon with trees bare.  Father see us, have compassion and help us to endure, and not just endure, but to know your bounty, bounty here and now and hope for eternal bounty.

*I now have word that Allistaire is scheduled for her brain MRI next Tuesday, 12/15, and her bone marrow aspirate and biopsy next Friday, 12/18.IMG_1974 IMG_1966 IMG_1965 IMG_1955 IMG_1947 IMG_1941 IMG_1936 IMG_1928 IMG_1924 IMG_1916 IMG_1910 IMG_1909 IMG_1908 IMG_1906 IMG_1903 IMG_1891 IMG_1889 IMG_1885 IMG_1882 IMG_1878 IMG_1877 IMG_1876 IMG_1875 IMG_1874

Numbers, Wild Numbers

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1975

2013

2,650,000

6,800,000

8,000,000

So something cool happened.  Forty years ago, in the year 1975, I was born.  I know, sweet, huh?  Just joking.  I mean I’m pretty stoked I was born but what my parents could not have imagined as they gazed down at their newborn baby girl’s little face was that something else significant had just been created.  Little did they know that blue-eyed baby girl cradled in their arms would one day desperately need what also had its beginning in 1975.  In many respects I think it is grace that we do not know the future, that we don’t have to carry burdens in the present of situations yet to come.  At that moment of my birth there was only joy, well my mom would probably say a little pain too.  And yet isn’t it amazing that long before we have a specific need, the provision is often already on its way to being available and ready for us? And so it was that in 1975, Fred Hutchinson Cancer Research Center came to be and would one day dramatically intersect the life of that little baby girl and her baby girl.  Beautiful.  Makes me smile BIG!

In the spring of 2013, there was a blue-eyed feisty three-year old girl named Allistaire.  Turns out she had an aggressive type of leukemia that just wouldn’t back down in the face of every type of chemo thrown at it.  It had come back after lying dormant after standard treatment and this time it was winning, filling her marrow and infiltrating the rest of her body with numerous tumors.  The doors just kept slamming closed.  But then, but then…a door opened.  Allistaire had the amazing opportunity to have her disease filled marrow obliterated and then rescued with an infusion of donor bone marrow stem cells from a woman in Germany.  This was only possible because of a wondrous clinical trial through Fred Hutch.  Had it not been for that trial, for that single open door, there is no doubt Allistaire would be dead in the ground right now.

Time after time Allistaire has been the blessed recipient of the expertise and amazing research through Fred Hutchinson Cancer Research Center.  I will always be indebted to that institution and its many phenomenal doctors and support staff!  It is my joy to commend them to you and to keep seeking to add to their ability to propel research forward and provide more open doors for children and adults alike who find themselves facing that wretched beast Cancer.

And WOW!  WOW!  Look at what we’ve been able to do!!!!!  This year, in August 2015, thanks to your incredible generosity, compassion and support, our Obliteride Team Baldy Tops raised $38,000!  In total over the past three years riding in Obliteride, our team has raised nearly $60,000 for cancer research at Fred Hutch.  This year’s ride raised $2,650,000, totaling $6,800,000 since the inaugural ride in 2013.  One hundred percent of that $6,800,000 goes directly to cancer research at Fred Hutch!  It makes me giddy.  Sometimes one’s efforts feel small.  It’s hard to put yourself out there and ask people to give of resources they could spend on themselves, and instead give it away for the betterment of others.  Then again, you never know when you might find yourself in the desperate position of needing another open door in your own battle against cancer.  When we put our efforts together they can have a BIG impact!!

Would you like to join us?  Our team this year was super fun and included Sarah from Utah – an amazing woman I had never actually met until the morning of Obliteride.  You should have seen her face when she finished her 50 miles – a beaming exuberant smile!  Also on our team were two fantastic nurses, Lysen and Adrienne, from the Cancer Unit at Seattle Children’s where Allistaire receives treatment.  Adrienne and her awesome dad rode on an old tandem bike (and I do mean old).  Carrie, our amazing financial counselor at the hospital joined us as well along with her friend Eric, a local business man who wants to give back.  And of course I had my dear sweet sister-in-law Jo by my side along with my oldest friend, Emily.  Jo’s sister, Annie, also joined us.  Her little baby boy, Marzio and husband, Franky cheered us on.  It is such an amazing experience to be in a swarm of people gathered together for one purpose, each brought to that day by their unique stories.  Obliteride has put together a short little video of this year’s ride to give you a taste of the experience.  You’ll get to see several shots of our team (I have on a blue helmet you see a few times.) Click HERE.

The beauty is you don’t have to be a cyclist to participate in Obliteride.  There are rides from 10 miles to 150 miles, from quick and easy, to covering two days and lots of hard-core hills.  Wherever you are on the cycling spectrum, there’s a place for you to have fun and give directly to cancer research.  Even your kids can get involved with the special kid’s ride.  The 2016 ride is over the weekend of August 12-14th, so mark your calendars to ride with us or be a volunteer.  Registration will open early 2016 and of course I’ll keep you updated!  If you’re interested in being on our team Baldy Tops, please simply leave a comment on this post and I’ll include you in my Obliteride emails.  Wouldn’t it be awesome for our team to reach the $100,000 mark with the 2016 ride?!  I can’t wait!  Here’s another fun video to give your more info on how to get involved in Obliteride.

This year is drawing to a close and you may be considering where to give your remaining 2015 donations.  While it isn’t yet time to fundraise again for Obliteride, you can still give to amazing cancer research at Fred Hutch.  One specific way is to support Dr. Marie Bleakley’s work.  She has been one of Allistaire’s primary bone marrow transplant (BMT) doctors at Fred Hutch for the past several years.  She is the BMT doc who is directing Allistaire’s upcoming (hoped for) transplant.  Like most of Allistaire’s doctors, not only does she do an incredible job clinically caring for patients, but she does amazing research.  One focus of her research is TCRs (T-cell Receptor T-cells).  You will remember that this is the sort of immunotherapy Allistaire received with her WT1 T-cells.  In the HA-1 T-cell immunotherapy that Dr. Bleakley is designing there are specific matching and mismatching requirements of the donor and patient which on one hand limit their applicability to a wide range of patients, on the other hand, they are not limited solely to patients with AML but could benefit patients with a variety of types of ALL (Acute Lymphoid Leukemia) and Lymphoma as well, thus expanding their impact.  Dr. Bleakley says that, “There are actually numerous targets like HA-1 and different targets will work for different patient-donor pairs. We are trying to build a toolbox of TCRs so that we can ‘type’ the patient and donor and figure out which TCR will work for them.”  This is personalized, targeted, sophisticated beautiful cancer treatment.

Dr. Bleakley has already been awarded a Bio Therapeutic Impact Grant of $682,000 from Alex’s Lemonade Stand (ALS) whose vast majority of funding goes directly to pediatric cancer research. I am told that 85 cents of every dollar donated goes to program and research grants with the vast majority of that going to the research end. Their program grants go to family’s to provide one lifetime grant of about $1,400 which we ourselves received two years ago in the form of plane tickets home for Allistaire and I.  Dr. Bleakley is able through Alex’s Lemonade Stand to raise up to an additional $25,000 in donations through the end of 2015. For every dollar up to $25,000, ALS will match one to one. So in total she could raise $50,000 additional to go toward her research.

This is an incredible opportunity to fast-track her research in the lab to actual patients.  The next step for her research is to take what they have been doing in the lab and bring it to a GMP (Good Manufacturing Process) lab. This independent lab would, with the aid of her research assistants, recreate their work in order to determine the safety and quality of the product they say they are producing. She said it’s like a dress rehearsal for the real process in which they would prepare the cell product for the patient. The information is taken and included in an IND (Investigational New Drug) Application for the FDA to approve. Once approved, they can then move forward to offering an actual clinical trial to patients. Basically they are at the point of taking their research in the laboratory and offering it as treatment to patients – that means an open door for patients with leukemia and lymphoma!  An open door!  You could help open that door.  To learn more about her research click HERE.  To donate and have your dollars matched one to one up to the goal of $25,000, click HERE.

You know what…At last count, Allistaire’s cancer treatment has cost just shy of 8 million dollars.  That’s more money than all riders have raised in total over the three years of Obliteride.  That is a crazy, mind-blowing number!  My jaw drops every time I think of that number.  Wouldn’t it be WAY COOLER if we could invest in research upfront that would reduce the cost of treatment, reduce the suffering, reduce the incredible investment of time of Allistaire’s life and our family’s lives fighting this fight?  When we put money upfront to accelerate research, we open more doors!  What if we didn’t have to rely on chemotherapy that isn’t targeted and takes down hearts and lungs and kidneys and livers and ovaries with the cancer cells.  What if there was a way to deliver radiation so that it only killed tumors and not brains.  What if surgeons could “see” exactly where tumor cells stopped and healthy cells started, getting all the cancer and sparing the rest? Wouldn’t it just be mind blowiningly awesome to use the incredibly complex, beautiful immune system you already have in your body to effectively and totally wipe out every last cancer cell so that “relapse,” is word never again uttered!  When we put our money and effort into research, it isn’t just one patient that is benefited.  Who can know how many people will be blessed by each step forward in cancer research.  And this is a world-wide endeavor!  Do you know that amazing minds are at work all over this earth trying to untangle the mysteries of cancer?!  Israel, Germany, China, Italy…What is learned here carries value across the world and their efforts likewise bless us!  Do you know that Fred Hutch has a cancer treatment clinic in Uganda?

As I have said many times, there are many worthy places to give of your time and money, many struggles on this earth that deserve and need our attention.  It just so happens that cancer came barreling into my life and so it does for many, many of us.  Cancer will touch us all, if not directly in our flesh, then most certainly in that of someone dear to us.  One in three women will get cancer in their lifetimes as will one in two men.  Thank you for the great swelling of your compassionate hearts that listened and responded in generosity and love.  May you find many open doors!!!

As for our little bright love, Allistaire Kieron Anderson, well, she thrives, she runs, she hops, she laughs silly little giddy laughs and she told me today that the numbness in her face is finally gone.  She looks incredibly good.  Only every now and then can I detect that her right eye is slightly off.  Yesterday she had a bone marrow test and today she had her PET/CT.  We should know results soon.  Hopefully the general trajectory going forward is one more round of chemo which will include Decitabine and Mylotarg again, though likely only one or two doses of Mylotarg this time instead of three.  Then, God willing, she will have her transplant.

We’ve been at this point before.  I am no fool to believe the road ahead is necessarily clear of barricades.  It as though she walks through a field replete with land mines. To get across to the other side will take a miracle, so fraught with danger is the road ahead.  Even yesterday, she had an echocardiogram which reported out an Ejection Fraction of 34 versus 45 last time.  I don’t know how the BMT doctors will interpret this.  The cardiologists say her heart function looks the same as it has on the last two echos despite variance in the numbers.  Thankfully her cardiac MRI showed no scarring and affirmed great improvement in her heart.  Going forward with chemo always opens the door to infections.  Two and a half weeks ago she went inpatient due to an infection and the next day she had a separate issue with an extreme rise in her liver function numbers we finally concluded was due to her anti-fungal, posaconazole.  Her ALT and AST were 1,156 and 1,450 respectively, the normal high being 40.  It has been imperative to get these numbers down and get her liver happy again as Mylotarg’s one direct toxicity can be to the liver both in the setting of when it’s given and in transplant.  Just getting to transplant is an incredible undertaking, then there’s the transplant process itself which holds many extreme dangers.  If you get past all of that, you still have to contend with the possibility of GVHD and relapse.  Thank you Lord that you have used these past four years to help me learn more and more how to walk day by day.

To learn more about the fascinating history and endeavors of Fred Hutchinson Cancer Research Center, click HERE

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Traction

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IMG_1475IMG_1286(Top pic: Allistaire 14 days after the first of three doses of Mylotarg; Bottom Pic: The day before the first dose of Mylotarg)

In late August of this year, eleven native Christian missionaries near the town of Aleppo, Syria were killed for their refusal to deny Christ and return to Islam.  Three were crucified and eight were beheaded after the women were publicly raped.  According to villagers who witnessed this, one woman reportedly “looked up and seemed to be almost smiling as she said, ‘Jesus!”

Perhaps you don’t believe this report.  I immediately thought of Stephen who stood up for what he believed, that Jesus Christ was the prophet God had promised to His people Israel and to Moses.  In the face of his life being threatened, he refused to back down.

Acts 7:54-59:  “When the members of the Sanhedrin heard this, they were furious and gnashed their teeth at him. But Stephen, full of the Holy Spirit, looked up to heaven and saw the glory of God, and Jesus standing at the right hand of God. “Look,” he said, “I see heaven open and the Son of Man standing at the right hand of God.” At this they covered their ears and, yelling at the top of their voices, they all rushed at him, dragged him out of the city and began to stone him. Meanwhile, the witnesses laid their coats at the feet of a young man named Saul.  While they were stoning him, Stephen prayed, “Lord Jesus, receive my spirit.”  Then he fell on his knees and cried out, “Lord, do not hold this sin against them.” When he had said this, he fell asleep.”

When I went to wake her, a stream of blackish blood had dried across her cheek as she slept.  Sometimes I would hold up my hand to block the right side of her face from my view, so that I could only see her left, so I could see the girl I recognized, my sweet Allistaire.  She would just cry and cry holding her little hand up to her right cheek.  She couldn’t close her jaw on that side, her teeth wouldn’t fit together, making eating difficult and painful.  Her eye was so bulged out and full of trapped fluid that I could barely see her iris.  I gave her as much oxycodone as the doctor allowed and let her sleep except for brief periods of eating.  I sat on the bed in the dark, only the glow of the computer screen visible.

Outside the world was bursting with life on beautiful fall days.  We were trapped in ever-deepening darkness.

At some point in the span of these brutal days, it suddenly occurred to me, the thought seemingly out of the blue…I am not afraid.  I am not afraid of Allistaire dying.  I am not afraid of the many awful ways situations in my life may turn out.  The realization shocked me but as the words formed in my mind, my deeper self affirmed, fear no longer has me caught by the throat.  I am released.  I have been freed from its strangling grip.

When I read about the woman, already raped, about to be beheaded, the woman who seemed to smile as she said, “Jesus!”…I nodded my head, yes, yes I can see how such a thing could be true.

People say to me all the time – ALL the time – I don’t know how you do this.  Behind such an astonished statement is the desperate hope that we will never be forced to endure such realities.  We look at our weak small selves and proclaim – I could NEVER do that!  Because we don’t want to, because we have created some sort of system in our mind, some law of the universe we desperately hope is true, that if I can’t endure something, I won’t have to right?  But the truth is – the world IS full of suffering and human beings have had to endure terrors far beyond their little girl having cancer and having to watch a tumor gnaw away her face.  We are resilient beings.  You do what you have to do.  We are overcomers and we crave such stories, it is core to our humanity.

With tenacity, with grit, with determination, with perseverance, perhaps with sheer rage, I can make it through this.  I can make it through, if even the worst comes to Allistaire.  But.  This is human effort.  This is what my flesh can muster up.

The paradox, the absolute resplendent beauty and otherness of God says, “No.  No Jai.  I will use these circumstances with Allistaire to tear you limb from limb.  I will allow you to be decimated.  I will crush you so that you gasp for breath.  I will gouge at your heart.  You will know anguish and darkness.  Panic and terror.  And at long last when I have laid you to waste your faint heart will groan and I will incline My ear to you.  And beyond all comprehension you will come to know a strength you could not have imagined.  You will know a peace that surpasses understanding.  You will drink of Me and not grow faint.  You will soar on wings like eagles.”  These used to be just pretty words.  Words I believed, but pretty little words you pat on the head and paint in some scrolly font and frame on the bathroom wall.

How many times have I in desperation, with tears said to Allistaire’s various doctors, “but I don’t know how to let her go.  I don’t know how to take her home to die.”  As I sat in the darkened room on the very grimmest of any days in this long fight, I felt rest.  I am not afraid.  Oh, I am radically sad, to my very core, but fear no longer saturates, suffocates.  It comes to this, at long last I believe the Lord will actually provide all that I need in the moment – not only to endure but to experience Him turning darkness into light, not because He changes my circumstances, not because He ends my sorrow, but because finally I have tasted of Emmanuel – the truth of “God with me” has sunk yet deeper into my very marrow.  I once read a book as a teenager, Abide In Christ, by Andrew Murray.  I abide in Christ as Christ abides in me.  Sounds so simple yet mystery.  I have come to believe – believe – how small a word, how utterly insufficient – nevertheless, I have come to believe that whatever my need, the Lord will meet me in that moment, in that circumstance, and supply in abundance.

Could I endure being publicly raped?  Could I say yes to Christ knowing if I denied Him they would stop torturing my child?  Could I bow to the blade that would soon decapitate and find joy in that very moment?  Can I know peace and even joy in the midst of incomprehensible sorrow should Allistaire draw her last breath?  I do not claim to know how the grace will come but I trust that God will be faithful to meet me fully in each moment and supply all I need to keep seeking His face – that even in the very darkest days He can make my face radiant.

It was odd to sense such peace in face of the thought of Allistaire’s death on the very threshold of the coming chemo we hoped would turn things around.  In the very span of days that the Lord seemed to remove the last stranglehold of fearing her death, there was hope that there might still be some way through.  The peace was unrelated to the hope of chemo working.  The peace lay coupled with death, yet, like burrowing through dark soil and rock, while you hope one day to come out into the light , you count as victory any forward motion.

It has been 22 days since Allistaire began chemo for this round and 16 days since her first dose of Mylotarg.  Night and day.  You can now hardly tell there is anything off with her eye.  You have to be looking for it to see it.  The bleeding has stopped, her sinuses no longer run, her cheek and eye seem normal in size, her double vision is gone, the pain is completely gone.  All that remains is numbness on the side of her nose and upper lip and an occasional expression with her eye that is not completely normal.  She is happy and full of joy and giddiness.  You would not know she had cancer unless you knew she had cancer.

Today I stood in front of two large computer screens with the radiologist, who took considerable time to explain the images and measurements from yesterday’s brain MRI.  The actual dimensions of both “granulocytic sarcomas,” or chloromas or tumors, have diminished only somewhat.  The larger tumor on the right is at its widest still just over 4cm.  The most impressive impact of the chemo is not best understood by measurements in centimeters but the images – wow – the vast majority of the inside of the tumor shows up black on the image – dead cells.  There is really only a “thin residual enhancing rim of the cellular tumor.”  This is most dramatically seen on the tumor on her right side in the “maxillary sinus,” where it no longer pushes up on the orbit/eye and no longer pushes in on her sinuses.  The radiologist informally said it looks like about 80% of the bulk is gone.  I won’t lie, it was pretty disturbing seeing the images from the September 29th MRI.  Every last bit of space was full of leukemia and it clearly had nowhere to go except into her bones.  Thank you God.  Thank you Mylotarg.

Speaking of Mylotarg, Allistaire and I, along with Solveig who we joyfully had with us over her fall break, had the honor and joy of meeting Dr. Irwin Bernstein.  He is both a lead researcher at Fred Hutchinson Cancer Research Center and Chief of the Division of Hematology/Oncology and Bone Marrow Transplant at Seattle Children’s Hospital.  This is THE guy who invented Mylotarg – okay, it was his lab that created this monoclonal antibody drug conjugate that targets CD33 and then unleashes the cytotoxic power of calicheamicin on leukemia cells!  It was just so incredible getting to sit down with him – this man who for decades has worked on cancer research and whose perseverance, brilliance and team work intersected our lives to literally save Allistaire!  I attempted to fully overwhelm him with my gratitude that he and the other folks in his lab would be spurred on!  Hopefully seeing Allistaire’s sweet face and a gruesome picture of her face pre-Mylotarg gave him encouragement that what he does has real, tangible impact!  Ever wonder why I am such a promoter of Fred Hutch?  This is just one example of why.  So much of what benefits Allistaire as she is treated at Seattle Children’s comes from the incredible science being done at Fred Hutch!

The other thrilling development is that last week I met with Dr. Cooper, Allistaire’s primary oncologist, Dr. Law, her cardiologist and head of the heart failure and transplant team and Dr. Bleakley, our primary bone marrow transplant doctor.  Also present in support were Jeff and Karen on the PAC (Pediatric Advanced Care) team and our social worker, Megan.  While I will hold off in explaining the details, in short, the outcome of the meeting was an agreement to aim toward getting Allistaire to transplant as fast as possible.  With Allistaire’s ejection fraction on her last echo being 45, she has finally reached the threshold for transplant.  There is a lot more to say on this subject but for now, the point is, we are now in a position with Allistaire’s cardiac function to consider transplant!  I can hardly believe she has made it this far.  Dr. Bleakley proposed a very interesting transplant option that I initially wanted to spit right out of my mouth in rejection – however, after more information and consideration, it seems it may be an incredible option for Allistaire.  A number of tests are underway to  determine our options moving forward.  The most immediate question is what chemo(s) to give Allistaire in the coming, and hopefully last, round of chemo before transplant.  While Mylotarg has been extremely successful for Allistaire (at least based on the brain MRI – we still have to see what’s in her marrow in the upcoming biopsy) it has in the past, when given in one large dose, been associated with VOD (Veno Occlusive Disease) during transplant.  Dr. Cooper is exploring chemo options available for Allistaire.

A month ago, two months ago, I just felt flat tired, worn down utterly.  Allistaire’s great response to Mylotarg along with the possibility of a bone marrow transplant in the relatively near future has created traction and, man, just gives you something to aim for instead of feeling like you’re stuck in an never-ending circle.  This week marks one full year since this most recent relapse.  We have lived in this wee hotel-like room at Ron Don for one year.  Had you told me on October 24th 2014, that I would still be living away from home a whole year later, without having even gotten to transplant yet – well, I could never have imagined how I would get through all that has transpired.  The Lord knows what is to come.  Hem me in Lord, behind and before.

We just have so much to be thankful for.  Thank you to the mom and daughter who gave Allistaire the obnoxiously large Frozen balloon and the purple hippo – just because – because you cared though you never met her.  Thank you to Dr. Nixon, the radiologist, who took the time to answer my myriad of questions, thank you to the person who gave me that Trader Joe’s card so I could buy lunch and dinner and dried strawberries that Allistaire likes after her yucky medicines.  Thank you to the unknown person who sent me that Kari Jobe CD – I hit “4” over and over and sing out loud in my car, “I lift my eyes, I lift my eyes.  Maker of the heavens.  Keeper of my heart!!!!”  Thank you to my parents who just keep helping to take care of Allistaire and showing me so much love.  Thank you dear friends who have provided us with airline credit and tickets so Allistaire and I can go home and Solveig can be here with us and Sten can fly out to see us and miss less work than if he drove.  Thank you to my in-laws who help us so much with Solveig.  Thank you to my sweet husband who works hard at his job and keeps things up so well at home – including my ridiculous plant collection, far too populated with ferns.  Thank you to so many of you who have given financially to cancer research.  Thank you, thank you for so many of you who have fallen on your knees before our Lord, who have wept on our behalf.

“Do not look at what you do not have, at what will be loss, rather, be expectant, be on the look out for what I will do, for the bounty I will bring,” the Lord softly declared to me on that gray December morning in 2011.  Oh Father.  You have been faithful, so faithful.  You have become more dear to me than I could have imagined.  You have ravaged me and shocked me at your ways.  Your words have taken on flesh and color where once they were just dry bones.  You, Oh Lord, have been good to me.  How I love you.  I prayed to you on so many first stars in the night sky, “Father, should one day something happen in my life that threatens to cause me to deny you, to leave you, hold me close, do not let me go.”  You have heard my cry.  IMG_1289 IMG_1292 IMG_1294 IMG_1296 IMG_1300 IMG_1312 IMG_1318 IMG_1319 IMG_1322 IMG_1324 IMG_1330 IMG_1356 IMG_1366 IMG_1371 IMG_1377 IMG_1392 IMG_1411 IMG_1432 IMG_1434 IMG_1436 IMG_1442 IMG_1450IMG_1477IMG_1488IMG_1493IMG_1505

T-Cells Tomorrow/Tuesday!!!!

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IMG_2954The last several days have been a whirlwind so this will be brief…

Tomorrow is the big day which really, won’t look like much at all on the surface.  Like countless days before, Allistaire will have labs, see the doctor and have an infusion.

The day begins at 8am at Seattle Cancer Care Alliance with a lab draw followed by being seen by Dr. Ann Wolfrey, the BMT (Bone Marrow Transplant) doctor who is assigned to this trial.  Per trial protocol, she will examine Allistaire and make sure she is fit to proceed with the T-cell infusion.  We will then head over to Seattle Children’s Hospital Hem/Onc (Hematology/Oncology) Infusion Clinic.  Around noon, the research nurse for the trial will arrive with the cells and the two-hour infusion will begin.  Allistaire will be closely monitored in clinic until 5pm at which time she’ll transfer just down the hall to the Clinical Research Center where she and I will spend the night.  Dr. Wolfrey will also be spending the night in order to respond to any issues that could come up and to examine Allistaire in the morning.  Assuming all is well, she’ll be done around 8 in the morning.

Severe reactions to the T-cell infusions have not been seen on this trial as is the case with the CAR (Chimeric Antigen Receptor) T-cells used to combat the more common type of childhood cancer, ALL.  This is both good and bad.  Because of the poor condition of Allistaire’s heart, she would not qualify for the CAR T-cell trial were she to have ALL.  However, the extreme immune response may also be indicative of the effectiveness and amazing success seen over the past two years with this new ALL treatment.  As I have said, Allistaire will actually be the first child to receive these genetically modified T-cells that target the WT1 protein on leukemia cells.  One thing that makes her different from other participants on this trial, besides being a child, is that she is on absolutely no immune suppressants. Most folks on the trial have much more recently had a bone marrow transplant and are likely to have at least some GVHD (Graft Versus Host Disease) which necessitates the use of some immune suppressants.  While Allistaire had mild acute GVHD after her bone marrow transplant, she has been off of steroids for well over a year so these T-cells will have nothing to suppress or hinder them.  Drops in blood pressure and fever are possible signs of an immune response.  Actually determing the effectiveness of these cells for Allistaire would take much longer and really can only be determined with the scans and bone marrow tests she always has to monitor her cancer, none of which have yet been scheduled for the future.

I am so thankful for this open door.  It would have been a very hard pill to swallow if Allistaire had never had the opportunity to have this genetically modified T-cell infusion, knowing these cells were crafted just for her.  At the same time, it has been a very long time since her last chemo and this process of gaining the IRB approval has added weeks to the time that her cancer has had the opportunity to grow.  Honestly, the doctors are not super optimistic about the effectiveness of these T-cells against chloromas which are Allistaire’s biggest challenge.  Boy would I just love it if these T-cells were her cure and we could at long last be done with this whole crazy thing.  On the other hand, if they could just buy her a chunk of time in which her heart could continue to repair and get stronger so that she could go onto have a second bone marrow transplant, well, that would be awesome.  I can’t think too much about it though honestly.  Even a good road ahead would necessitate many more months.  I’m flat worn out.

Another mom we met months and months ago stopped me in the parking garage at the hospital today.  Her little guy has neuroblastoma and despite doing all sorts of crazy intense treatment, he’s not in remission.  She asked me how I do this.  I didn’t tell her I rely on God.  I told her sometimes I think I’m going to lose my mind.  Sometimes I feel like I’m being crushed in a vice.  But what choice do we have?  I asked if she’ll be in clinic tomorrow and she said yes.  I want her to know I feel the searing pain, the deep, deep ache.  Jesus comes to us in our sorrow, in our broken heap of ourselves, our messy, screwed up lives.  He mourns with us.  I mourn with her.  I mourn with another mom who lost her sweet girl earlier this spring.  She amazingly, courageously, compassionately texts me regularly to convey her sweet heart toward us, cheering us on.  I so want Allistiare to live.  But sometimes I wonder, am I to cross over that line that I might sit and mourn with those who have lost their child?  Am I to know that loss that I might have a voice in that dark, brutal land?  With weeping heart and trembling hand, quavering voice, may I sing of a God who meets us in the dark, pointing to His beauty, resting in His wild audacious promises of redemption, or resurrection, of love that defies our small ideas of good.

I flew back to Seattle from Bozeman early this morning.  I went home for just over 48 hours so I could be there for Solveig’s birthday party, to witness the mysterious tribe of 4th graders unfurling, running laps around the house and through the yard, squirt guns and chocolate cake and massive balloons and Solveig giggling over the fact that Jake wrote, “Love Jake,” on her birthday card.  As our plane headed west the clouds slowly increased.  We flew at 25,000 feet.  I thought I could make out the great curving rend of land to the east of Whitehall and then the scarred earth of the mine nearby.  Little flits of clouds became strangely speedy fleeces blocking the land.  Here and there whole canyons and low places where entirely engulfed in white.  Having grown up in Washington, countless days passed with that blanket of gray, drab, draped over the curvature of our wee bit of sky.  A smile flooded by fatigued face as I remembered the first time I flew up out of the clouds of Seattle as a teenager into a brilliant azure sky.  It was disorienting in a laughable, delightful sort of way.  But, but…I thought the world was gray and drab and depressing?!  And all this time, just beyond the scope of my eyes there existed a beautiful reality far more vast in its expanse than my view of horizon to horizon?  So my view is not all there is?

The clouds, they come and go.  The blue of sky is always there, always, even when I cannot see it at all, even when it seems the whole world is made of drab grey.  Father above, thank you for your constancy, your vastness, your reality that transcends my transient life and circumstances.  Tomorrow is the day you have made, and I will be glad in it!

By the way, tomorrow Allistaire will wear a very special shirt.  It is the same shirt, just two sizes bigger, than the one she wore on a very special day just over two years ago.  On June 18, 2013, Allistaire was given another infusion, one that like that of tomorrow, looked deceptively simple and uneventful.  On that day, Allistaire was given the stem cells of a woman from the other side of the planet, in order to “rescue” her, in order to give her a chance at new life after the old marrow had been wiped away.  Tomorrow, that woman’s compassionate, generous heart has made a way, yet again, for Allistaire to have another chance at life.  It is her T-cells that have been genetically modified and will be sent rushing through Allistaire’s tubies into her flesh.  Thank you to this unnamed woman, thank you.  We long to meet you in person one day.  We are so indebted to you.  If YOU would like the opportunity to save someone’s life, you can sign up at Be The Match.Org to be on the bone marrow registry.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  2 Corinthians 4:16-18

APPROVED!!!!!

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rocking chairFour years ago we could never have imagined this little girl connected to genetically modified T-cells but I just got word that the IRB did approve her to move forward with the WT1 trial and get her T-cells!!!! I have no more info at this point but know that they are trying to plan it for next week though this Friday is also a slim possibility.  Her ANC today was 832.  Platelets are still low requiring a transfusion last Saturday.  Thank you for all of your encouragement and prayers!

Thank you God for another open door, a massive thick, seemingly immovable door!