Tag Archives: Mylotarg

Transplant, Haplo-Style

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

And So It Begins

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

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

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

We stand at an open door.

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

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

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

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

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

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

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FullSizeRender-2FullSizeRender-3The conclusion of Allistaire’s biopsy is well, sort of inconclusive.  What we can say definitively after a week of numerous tests on the sample from her lungs is that it is not leukemia, not fungus and not bacteria.  Obviously this is all good news, actually fantastic news!  However, there is something going on in there.  We seem to be down to two remaining possibilities not previously considered.  Either the spots are evidence of a recovering infection or are evidence of Cryptogenic Organizing Pneumonia (COP).  The cells are described as hemosiderin laden macrophages.  Actually, the description of the tissue is far more detailed than that – I will include it below just so you can be in awe of both our amazing bodies and of the task of the pathologist.  In a way it would be surprising if the spots are evidence of a recovering infection given that they were not present on the previous CT, nor has she had any symptoms.  On the other hand, the sort of COP that Allistaire could have is actually a complication of a bone marrow transplant typically seen in adults and is a process of GVHD (Graft Versus Host Disease).  Allistaire did have COP in the spring of 2014 and was successfully treated with steroids.  Again, Allistaire has absolutely no symptoms of anything happening in her lungs, just this sole indication derived from the CT.

The plan is to re-scan next Wednesday, 11/25.  If the spots are the same or worse, she will likely be seen by a pulmonologist at SCCA (Seattle Cancer Care Alliance).  Dr. Cooper is also consulting with Dr. Carpenter, who is a pediatric BMT (bone marrow transplant) doctor who specializes in GVHD.  He is the doctor that directed the treatment of her previous COP.  It is not an optimal time right now for Allistaire to be on steroids if this is the required treatment.  Steroids suppress the immune system which added to the suppressive effect of chemo is a double whammy in terms of vulnerability to infection.

As of today, Allistaire has started what we hope and pray is her last round of chemo before transplant.  Just like the previous two rounds, she will start with five days of Decitabine followed by Mylotarg.  The exact number of Mylotarg doses is still to be determined.  It sounds like given the hoped for timing of transplant, it may make more sense to do only two doses.  Dr. Cooper and Dr. Bleakley are working together to sort out all the details.  Oh, I should also mention that Allistaire’s cytogenetics from her bone marrow also show no evidence of the MLL rearrangement by FISH which means no evidence of AML in her marrow.  This is in keeping with the clear results from the Flow Cytometry test.

As for today, Allistaire and I are delighting in having Solveig with us for a week and a half.  She flew in yesterday and Sten’s parents will drive out on Tuesday.  Sten will fly in on Thanksgiving morning and Allistaire will get her first dose of Mylotarg.  The bummer thing is that it seems Solveig has just started showing symptoms of a cold.  I don’t know how Allistaire will avoid it but I so hope she can.  We are looking forward to Thanksgiving with the joy of so much family with us.

 

Lung Biopsy – Microscopic Description:

H&E stained sections demonstrate lung with large foci of atelectasis and collapse intersected by bands of septa with increased fibrosis and vessels with hypertrophic walls.  There are increased macrophages within alveolar spaces, many of which contain hemosiderin or foamy material.  Hemosiderin laden macrophages are particularly prominent around bronchioles.  Also conspicuous are scattered small and large droplets of exogenous lipoid material in airspaces.  Well-inflated lung parenchyma in well-expanded areas shows thing delicate alveolar spat without fibrosis or significant inflammation.  Inflammation is patchy, mild to moderate and airway-centric, consisting predominantly of lymphocytes and plasma cells admixed with few neutrophils.  Infiltration of inflammatory cells in the bronchial epithelium is seen, and there is associated plugs of fibroblastic tissue (organizing pneumonia) as well as mucostatsis in airways.  Bronchioles also demonstrate smooth muscle hyperplasia and sub-epithelial fibrosis.  Many airways have moderate to marked luminal occlusion by well-established collagen deposition (constrictive/obliterative bronchiolitis) as highlighted by Movat pentachrome stain.  There is mild medial thickening of pulmonary arteries and veins show intimal fibrosis as well as muscular hypertrophy.  No atypical cellular population is seen, confirmed by CD15 and lyzozyme stains.  Viral cytopathic changes are absent.  Fungal and bacterial stains are negative.

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

Eroding

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IMG_1270IMG_1282To be honest, Allistaire felt anything but strong against cancer on Thursday after being discharged from the hospital.  Nevertheless, it was a glorious day and this was to be our one shot for Allistaire to go to the pumpkin patch.  Minutes before I took this picture she was crying hard because of pain in her face.  Pain where the leukemia is eating away, eroding the bone.  After eating a couple of chips so her stomach wouldn’t be empty, I gave her a dose of oxycodone.   There is now a 3 X 3.8 X 3.6 cm mass of leukemia in her right sinus which is pushing her eye forward, and affecting her sinuses.  Her nose runs constantly now.

“There is expansion and bony erosion of the right maxillary sinus.  The mass extends into the right orbit resulting in mild mass effect on the right globe and minimal right proptosis.  The mass extends into the right nasal canal replaces the middle and inferior nasal turbinates.  The mass also involves the right ethmoid and right sphenoid sinuses and alveolar ridge.” (Brain MRI report)

There is also a growing mass in her left sinus measuring 2.5 X 2.3 X 1.5 cm.  The cancer is pushing its way into the roots of her molars.

It hurts to look at her.  It’s hard not to have my attention drawn right to that eye.  I wonder what other people see.  I feel some strange inward compulsion to tell everyone who sees her, this is not her.  You are not really seeing my sweet girl – this weak, crying, deformed child is not her.  But this is what childhood cancer looks like.

Originally, Allistaire was going to be discharged from the hospital Wednesday.  Her scans that had been rescheduled for Monday had to be changed to Tuesday because her blood sugar level was too low on Monday to make anesthesia safe and the docs couldn’t just replete her glucose because then the PET scan wouldn’t work.  So once Monday’s scans were cancelled we disconnected her NG tube from suction and amazingly 21 hours later she still hadn’t thrown up – this despite drinking a full cup of apple juice in relative short time to get her blood sugar level up Tuesday morning just in time for the cut off for the PET scan and anesthesia.  Thankfully all went well with the scans and the anesthesiologist said she did great.  So just before she woke up, the nurse removed the NG tube from Allistaire.  She was quite excited and proud when she woke up to find the tubie gone.  I was hopeful that with scans done and the tube gone we could get out of the hospital

Sadly, Allistaire’s potassium has been very low for over a week, so discharge was delayed.  The theory is that with all of Allistaire’s stomach contents being suctioned out, her electrolytes have gotten off their normal levels.  Low potassium is dangerous because it can cause arrhythmias in her heart.  So it would seem like the best course of action would be to give her a potassium supplement to replete her levels.  However, Dr. Rosenberg, the attending doc, feared Allistaire might either have or was going to have tumor lysis.  Tumor lysis is the breaking up/death of cancer cells in which the contents of the cells go into the blood stream and eventually have to be processed by the kidneys.  Extensive tumor lysis can be too much for the kidneys to handle and can actually cause acute or even permanent kidney failure.  This is what happened to Allistaire the last time she took the chemo, Mylotarg.  Cancer cells can lys as part of their normal life cycle or because of being destroyed by chemo.

Dr. Rosenberg originally suspected tumor lysis because Allistaire’s uric acid level jumped up.  I questioned this given that Allistaire had ceased taking Allipurinol, which removes uric acid, due to her ileus. Apparently, however, under normal circumstances, the body doesn’t produce uric acid, though Allistaire’s must because she has required long-term use of Allipurinol.  In order to quickly remove uric acid, Allistaire was given one dose of IV rasburicase (which turns out to be about $7,000 a dose).   Because tumor lysis can also cause a dangerous jump up in potassium, Dr. Rosenberg wanted to be conservative and only minimally replete her levels.  For this reason, a low dose of potassium was added to her fluids which helped keep her level up just enough to mitigate the risk to her heart.  However, her level remains too low for her to restart her Digoxin and Lasix at this point.

Allistaire’s face has been getting progressively worse, even in the course of days.  The side of her face along her nose is now numb presumably from a nerve being effected by the leukemia.  She looks like she’s been beaten.  The whole right side of her face is strained and bulging from the relentless march of cancer and its apparent impact on the draining of her sinuses.  There is something so wretched about it being in her face.  It feels like she’s being stolen away.  I look to her left eye to see the Allistaire I know, the one I know is in there, shrouded by this struggle.  She’s had pain before, pain her legs, arms, arm pit – so many places these chloromas have showed up – twenty-nine different tumors or “myeloid sarcomas” as her MRI refers to them.  But the face?!  Not her face Lord!  Please spare her pain and deformity there.

I am holding out for Monday.  Monday will be her first dose of Mylotarg.  Today is day 4 out of 5 for the chemo Decitabine which will be followed by doses of Mylotarg on days 6, 9 and 12.  For Decitabine we go to clinic but Monday she will be readmitted to the hospital in anticipation of the much hoped for, yet dangerous, tumor lysis.  Dr.  Cooper is strategizing how to best prepare her, knowing that due to the limitations of her heart, he cannot simply flood her with fluids to wash out the cancer cell guts we want to break open and spill out into her blood stream.  In coordination with cardiology, she will get what fluids she can and he is planning to give her another dose of Rasburicase to completely wipe out the uric acid.  However, the phosphorus and potassium can also rise to dangerous levels.  Sevelamer can be used to bind-up the phosphorus.  She will remain in the hospital at least through Thursday when she gets the second dose of Mylotarg on day 9.  Should she have any fevers, she would need to stay in the hospital for at least 48 hours.  Around day 21 she may have another brain MRI with the intention of determining what cancer is left in her face and planning radiation for what remains.  Our very dear Dr. Ralph Ermoian is the radiology oncologist who is responsible for determining if and when radiation is an option, what are the risks and benefits and what type of radiation will be best given the location.  He is an exceptionally kind man and I feel blessed to have him be a part of Allistaire’s care.

On another note, in case you haven’t read “The Emperor of All Maladies,” I will yet again highly recommend it.  Something I found so fascinating as I read through the history of cancer was the role of “serendipity” in the progress and advancement of the understanding of cancer and its treatment.  The author used this word on a number of occasions to account for circumstances in which unexplained events and even mishaps resulted in progress.  Whenever I would read of “serendipity,” my face would light up with a smile.  Am I just looking to give God credit where it was really just happenstance, chance?  Yes.  Yes I am.  Because I don’t believe in chance.  I believe in a God who orchestrates – down to the details.  I believe in a God who works through circumstances to accomplish His will.  Please be praying for “serendipity.”  AML experts from around the country will be meeting next week as part of the Children’s Oncology Group.  As well, my friend Julie Guillot, whose son Zach died of AML, will be in New York meeting with the CEO of the Leukemia and Lymphoma Society to challenge them to substantially increase their financial support of research for pediatric AML in their “Beat AML” campaign.  Collaboration of doctors, researchers, funding organizations and parents of kids with AML is imperative to drive us closer and quicker to lasting cures and less toxic treatment options.  There really is excitement in the air.

I didn’t realize it until I was saying it, but I told Dr. Cooper the other day, “We parents are your biggest advocates and promoters.  We are the biggest believers in cancer research.  We are the keepers of the stories and faces that can turn people’s hearts to give to cancer research.  You can’t expect us, of all people, to give up hope, to say we are done fighting, to raise the white flag.  We CANNOT.”  The world of cancer treatment is on the move due to the accomplishments of cancer research.  Just around the corner, yet out of sight, might be the thing that will provide Allistaire’s next open door.

Today such a thing is hard to imagine.  Today there were blasts (cancer cells) in her peripheral blood.  She wants only to sleep.  When she is awake she tenderly holds her hand to her right cheek and cries, saying “ouchie” over and over and over.  She doesn’t want to eat because it hurts to chew.  I will turn to look at her and again see bloody snot running from her nose.  She is miserable.  The last few days have been the first time I can imagine ever saying yes to hospice.  If it were not for the hope of Mylotarg, the hope of something that would work…if this cancer was left to progress…it’s nauseating.  It is a magnificent fall sunny day.  Families are headed to the pumpkin patch while my child languishes in a dark room, moaning in her sleep.  It hurts.  It hurts so bad.

I want to sincerely thank Keith & Janet Stocker of Stocker Farms for their compassionate and generous hearts that have chosen to give the proceeds of this year’s Pumpkin Patch to Strong Against Cancer which is a collaboration of doctors, nurses, researchers, hospitals, companies and people like you who are supporting the medical breakthrough of using immunotherapy to treat cancer – much of which is being developed at Seattle Children’s Ben Towne Center for Childhood Cancer Research.
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Weeping

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IMG_1237“I’m so afraid,” Allistaire cried.  Afraid of getting a tube up her nose.  She shook in fear, head hunched and little shoulders curled in.  “Allistaire, I am not going to make you get the tube.  You can decide.  I’m going to let you choose.  Either your tummy can hurt and you’ll keep throwing up or you can get the tube that will help you feel better even though it will be scary at first.”  Rubbing her back I heard her barely audible words, “I’ll get the tubie.”  Okay, okay…I went to let the nurse know.  The doctors put in the orders and the nurse and I brainstormed the nurse best able to get the tube in quickly and skillfully.

Wednesday’s CT showed a hematoma on her duodenum right where the GI doc took biopsies as part of the routine endoscopy.  Despite getting a platelet transfusion that morning, a swelling bloody bruise had blocked the passageway to Allistaire’s intestines thus forcing all of her stomach acid and bile up and out and preventing anything from going down.  Unlike her previous ileus in July where her gut simply stopped moving, in this case there is an actual physical blockage that given time will heal.  Wednesday night she was admitted to the Cancer Unit where she is getting fluids with electrolytes and as many of her meds that can be given in IV form.  Unfortunately not all of her meds, especially a number of her heart meds, can be given through her IV so at this point she is just not getting them.  She also has not eaten since Monday evening at the airport when she was made NPO (Nothing By Mouth/Nil Per Os).  At this point, because we hope this resolves soon, she is not on TPN (IV nutrition).  Because of her throwing up, her brain MRI and PET/CT which were scheduled for Thursday were cancelled due to the greatly increased risk of anesthesia.

Allistaire has simply laid in bed.  She is not interested in almost any activity.  She speaks very little and isn’t willing to engage in our usual joking.  Her eye is bulging more and more prominently with a disturbing degree of white around her pupil.  I try to make myself look at it, to say, “I see you. I love you and I will not look away from who you are and the battle you are in.  I will not turn away, though it pains me.  I love you.  I will never turn from you my dear sweet child.”  The contrast from just Monday afternoon rips at my heart.  That girl ran and giggled with joy and was full of bright bursting life.  This girl just lies on her side, sucking her thumb and gripping doggie.  Not much of anything interests her.

In rounds Friday morning we discussed the possible advantage of a NG tube known as a Salem Sump which, using intermittent suction, pulls out gastric contents.  The GI doctor did not think it was medically necessary for Allistaire to have one but was in full support to provide her comfort.  Once Allistaire agreed to the tube, Catherine, one of the charge nurses, gathered the necessary materials and graciously talked Allistaire and I through the process.  Allistaire sat on my lap with my arms around her.  She was very brave, though terrified.  The tube going down her throat caused her to gag and throw up and tears streamed down her face as she kept drinking at the insistence of the nurse in order to help the tube go down.  Catherine did an excellent job and got it just right on the first try.

As soon as she could speak, Allistaire began to scream that she hated it!  “I hate it!  I hate it!  I hate it!” she bellowed over and over, slamming her little fists on the bed.  The nurses cleaned up and left the room.  After minutes of yelling that she hated it, she demanded, “Take it out!  Take it out!  Take it out!”  Without relent, her fury burst out before her, explosions of rage igniting the air.  She sat on my lap, her back against my chest and I loved her.  I rubbed her arms.  My heart heaved.

She turned and faced me, her blue eyes blazing, sheen of tears.  Blue eyes I had given her.  Blue eyes from my mom, from her mom and my grandmother from hers.  Five generations of blue eyes, her’s fierce and pleading.  “Mommy, mommy, take it out please!  Please mommy.  Please mommy!  Mommy please. Please take it out.  I’m begging you, take it out, please take it out.”  On and on.  My eyes filled, face contorted and sobs welling up from the deep.  I rubbed her back and held her and said, “No.  No.”  “Please Mommy!  Please, I’m begging you mommy, take it out!  Take it out Mommy please!”  Our two faces facing each other each, red and puffy, streaming tears.  “No, Allistaire, I will not take it out.  We are going to give it a try and see if it will help you feel better.”  Relentless were her pleas.  Inside my heart was tormented, hating to see her so afraid, so angry, so desperate, so insistent that I help her and knowing that in my love for her, I would have to hold strong, denying her the very good that consumed her mind.  The only good that seemed good to her was that tube coming out of her nose and throat. In that frenzied moment she could not imagine the relief she would soon feel.  But oh how my heart hurt for her.  What brutality to see your beloved hurting and to know you put them in that position and though you could end their pain, you will not for the very reason that you love them and you are in a better position to know what’s best for them.

In the midst of her rage, her agonized begging, her quaking little body, sitting on my lap, I, her mother, the flesh that bore her, my being overlapped with hers, my heart swelling and leaking out around me with pain because of her pain, sorrow for her sorrow, the Lord whispered into my heart a clear and quiet and sweet tender truth, a barely audible love song:  “This is how I love you Jai.  You rage in fury.  You demand Me to make it stop.  You scream.  Your heart breaks because of the terror, the pain – it swamps you and it is all you can see.  You beg Me to make it stop.  You plead, Father make it stop, make it stop.  And I have not.  I have not stopped the onslaught.  You feel your very flesh being flayed open and you beg me to see you and to stop this horror.  I see you my child and I love you.  I will not turn away.  And though you do not understand, and though it feels like cruelty to you, like abandonment, there is a reality and future you cannot see – a sweeping truth that far exceeds your terror that in the expanse of time will be a vapor.  Not only will your all-consuming sorrow pass in a heartbeat, but it dwells beautifully interwoven into staggeringly glorious brightness – a story, a reality, a magnificence, a good beyond any good.”  And as He whispered into my heart, I knew just as clearly that He weeps over my weeping.  While He has chosen to allow this brutal path, He grieves with me and for me.  His heart heaves and tears open.

In that moment, beyond all other moments, I felt the love of my Father.  I could sense the thudding of His heart, the heaviness of His tears, the gripping of His arms around me as we wept together over this brutal tragic broken world where children die agonizing deaths, where beautiful, wild, intoxicatingly amazing creation lies broken.  And not just sorrow in the abstract, brokenness in general, but this pain, this brokenness, this threatening death, this little blue-eyed girl at the center of so many who love her.  And somehow I have now come to trust more than ever before, that though He does not raise His hand to stop what feels only like death and cruelty, it is His very love that holds back His hand.  He has not turned away from me, from this ragged awful scene in Forest A Level 8 room 301 in Seattle in the year 2015 to a little girl named Allistaire and her family.  He weeps with me.  He does not act in the way I desperately want, not because He incapable, nor because He is cruel, but because His love and His good exceeds my comprehension, surpasses my finite flesh.

Allistaire’s Flow Cytometry results came back from her bone marrow biopsy on Tuesday.  She has 5-6% leukemia in her marrow.  This is the first time her marrow has not been clear since last October.  The leukemia makes its vicious presence known, pressing behind her right eye.  I can only imagine the infiltration the PET/CT will eventually show.  We must act rapidly.  Dr. Cooper comes to talk with me.  What do I want to do.  I told him the day before that I wanted to do Mylotarg again – it had a dramatic effect on her chloromas.  But now we know it’s in her marrow too.  “Is this a ‘quality of life’ conversation?” I ask him.  “No, this is not a quality of life conversation.  Well, maybe it is.  Social work said you asked about hospice.”  I tell him that, yes, in July when we first knew of the chloroma in her sinus cavity I feared Allistaire would die this summer.  I honestly had little hope for the Mylotarg to be effective.  But then it was.  No.  No.  I do not want to stop trying.  We have a goal.  We march, rather we trudge, forward in hopes of her heart eventually recovering enough to endure a second transplant, her only hope for to cure her AML.  The T-cells were ineffective to stop the progression of her disease.  There is still pneumonia in her lungs.  This upcoming chemo will once again suppress her marrow and wipe out her immune fighting cells, leaving her open to more infection.  But what is the alternative?  Doing nothing?  Doing only something minimal that we know will only slightly slow impending death?  I ask Dr. Cooper how may children in Allistaire’s situation have you seen make it?  His shakes his head, “Maybe one.”

At lunch I sat at a restaurant reading, while Allistaire’s fantastic volunteer from Side-By-Side , Kaley, attempted to play with her at the hospital.  I’m reading Sue Monk Kidd’s novel, “The Invention of Wings.”  It is set on a plantation in Charleston, South Carolina in the early 1800’s.  One of the slaves has just been told she will be sold off.  She, the slave, is “staring at Phoebe.  A daughter she’d never see again.”  The words exploded pain in my heart.  I gulped air, my shoulders crumbled in sobs.  With head bent low, I covered my face with my hands and hot tears just spilled over, overfilling the deep well of my flesh, that dark warm cave where my spirit dwells.  She is just a character.  The story just a story.  But she isn’t.  She is as real as my shaking hands and swollen eyelids.  She is countless women who have lost their child.  She is the great-grandmother of people I pass on the street, in the hall, in the grocery store.  Her’s is a story of loss, of overwhelming sorrow, of brutality.  She is and I are bound by this unique pain of staring at child we may never see again.

Earlier in the morning I was reminded of the story of Jesus standing before the tomb of Lazarus.  The Bible says, “Jesus wept.”  Why?  What did He weep for?  He knew that Lazarus was sick, “unto death,” and he tarried.  He did not intervene.  He allowed Lazarus to die.  And as He stood there weeping He knew that He would raise Lasurus from the dead.  So what was the source of His sorrow?  For what did the God of the Universe weep?  I wonder if He wept because His heart broke over the brokenness of this world, over the wrenching, severing pain of sickness and death.  I wonder if He wept because His heart inclined to ours and He felt in that moment the immensity of our sorrow, we finite beings broken and weeping.

In that moment I read the words of a slave woman who would never again see her daughter, I knew that it is not enough to love one another from a distance.  No, and at this my whole body shook with grief, we must come in close, we must enter into the very same spaces of pain that do those we seek to love.

As a teenager, zealous with sincere love for the Lord, I knew that He asked two things of me –  that I love Him above all else, and that I love others as myself.  I saw that in a very direct way, a love for Him would manifest itself in love for others.  My love for others would be clear evidence of my love for Him.  For that is the sort of God He is.  He is a God who said that to love is to lay down your life for another.  I cannot claim to love God and not love others.  I thought I wanted to be a doctor.  I saw that Christ always met people’s tangible needs before telling them of their spiritual need for a relationship with Him.  He gave them food, He bound up wounds and brought sight to the blind.  I thought this – this is what I can do to love – I can bind up wounds, I can care for the sick.  At some point in my college years I opted to switch to social work, seeing yet another, and perhaps more direct route to coming close to people in need.  I wanted to care for the sick, the orphan, the widow, the prisoner.

But, though I did not consciously think of it this way, this is a bit of a top down approach.  I was not planning on being sick.  I did not want to be poor or widowed or orphaned.  I did not want to be weak and in need.  I did not want to be of little worth in the eyes of the world.  I did not want to be someone whose sight brought pity and cringing.  No, I wanted to be ever so grateful for all the good and bounty given unto me and out of this abundance, give to others.  This is how I planned to love and fulfill God’s command to love others.  It gave me a warm sense of satisfaction.  Oh I could have pursued some money-making profession, but rather, I had chosen to be down here with the broken.  I had a lovely little plan of how my life would bring glory to God and I was sure He was pleased as well.

And then came His sickle and He slashed at all my beautiful plans and my beautiful life and it scattered and bled out with me bewildered.  Once upon a time, the God of heaven sent manna down to earth to be nourishment for His people.  And then came Jesus, Christ, Emmanuel – God with us.  God with us.  God came down to dwell with man.  He came down.  He came down and lived on dirty roads and endured hardship and betrayal and mockery and sorrow and ultimately death.  It was Christ’s hand that gave the bread, that put mud in the blind man’s eyes to give sight, His hand that touched the leprosy.  This is the love of God – a God who was not content to stay far off in His glorious heights of heaven but came down low to dwell with men, that He might be not just a God of truth and beauty and power, and not even just a God of love, but see this – a God of compassion – a God who weeps.  And as I read those words that bound me to that black slave woman hundreds of years ago, I thanked God for this thinnest thread, this meager connection to her pain, to coming close to her, to hearing the weeping thud of her heart.    The sobs that silently racked my body were not only for Allistaire, but for seeing that the way God has asked me to love is the way that He has loved, to dwell in the same spaces of pain and reality as those who also need His comfort.  Truest love cannot love from afar.  It must come in close and the only real way to come close is to sit side by side just as Christ hung between two others bound to crosses.

This is the closest I’ve come to knowing what it is to share in the sufferings of Christ.  The closest I’ve come to taking up my cross.  It is so much less noble than I would have liked.  It is gritty and brutal and the road to the horizon seems to go on and on.  Who am I Lord?  I am no one.  I am just one girl, one person in the vast history of humanity, one of billions and billions, a vapor, a mist, a blink of the eye.  And yet, as His arms encircle me, and He says No to my pleas to make it stop, I know that He is weeping with me and never have I been so confident of not just His goodness, but His love, His love.  And I pray, Lord, use this one frail broken life to sit with another who weeps, that they might know my love and in turn know Your compassionate love.  This is your way.  I wish there were another.  I wish it didn’t have to hurt so bad.  But the pain speaks of the depth and breadth of the brokenness and I know you have not come only to weep with us, but also to mend, to make right, to redeem the loss, to wipe away at long last every tear.  Come swiftly Lord and tarry only that more might turn and be enveloped by You.

The Death of Lazarus – John 11
11 Now a man named Lazarus was sick. He was from Bethany, the village of Mary and her sister Martha. 2 (This Mary, whose brother Lazarus now lay sick, was the same one who poured perfume on the Lord and wiped his feet with her hair.) 3 So the sisters sent word to Jesus, “Lord, the one you love is sick.”

4 When he heard this, Jesus said, “This sickness will not end in death. No, it is for God’s glory so that God’s Son may be glorified through it.” 5 Now Jesus loved Martha and her sister and Lazarus. 6 So when he heard that Lazarus was sick, he stayed where he was two more days, 7 and then he said to his disciples, “Let us go back to Judea.”

8 “But Rabbi,” they said, “a short while ago the Jews there tried to stone you, and yet you are going back?”

9 Jesus answered, “Are there not twelve hours of daylight? Anyone who walks in the daytime will not stumble, for they see by this world’s light. 10 It is when a person walks at night that they stumble, for they have no light.”

11 After he had said this, he went on to tell them, “Our friend Lazarus has fallen asleep; but I am going there to wake him up.”

12 His disciples replied, “Lord, if he sleeps, he will get better.” 13 Jesus had been speaking of his death, but his disciples thought he meant natural sleep.

14 So then he told them plainly, “Lazarus is dead, 15 and for your sake I am glad I was not there, so that you may believe. But let us go to him.”

16 Then Thomas (also known as Didymus[a]) said to the rest of the disciples, “Let us also go, that we may die with him.”

Jesus Comforts the Sisters of Lazarus
17 On his arrival, Jesus found that Lazarus had already been in the tomb for four days. 18 Now Bethany was less than two miles[b] from Jerusalem, 19 and many Jews had come to Martha and Mary to comfort them in the loss of their brother. 20 When Martha heard that Jesus was coming, she went out to meet him, but Mary stayed at home.

21 “Lord,” Martha said to Jesus, “if you had been here, my brother would not have died. 22 But I know that even now God will give you whatever you ask.”

23 Jesus said to her, “Your brother will rise again.”

24 Martha answered, “I know he will rise again in the resurrection at the last day.”

25 Jesus said to her, “I am the resurrection and the life. The one who believes in me will live, even though they die; 26 and whoever lives by believing in me will never die. Do you believe this?”

27 “Yes, Lord,” she replied, “I believe that you are the Messiah, the Son of God, who is to come into the world.”

28 After she had said this, she went back and called her sister Mary aside. “The Teacher is here,” she said, “and is asking for you.” 29 When Mary heard this, she got up quickly and went to him. 30 Now Jesus had not yet entered the village, but was still at the place where Martha had met him. 31 When the Jews who had been with Mary in the house, comforting her, noticed how quickly she got up and went out, they followed her, supposing she was going to the tomb to mourn there.

32 When Mary reached the place where Jesus was and saw him, she fell at his feet and said, “Lord, if you had been here, my brother would not have died.”

33 When Jesus saw her weeping, and the Jews who had come along with her also weeping, he was deeply moved in spirit and troubled. 34 “Where have you laid him?” he asked.

“Come and see, Lord,” they replied.

35 Jesus wept.

36 Then the Jews said, “See how he loved him!”

37 But some of them said, “Could not he who opened the eyes of the blind man have kept this man from dying?”

Jesus Raises Lazarus From the Dead
38 Jesus, once more deeply moved, came to the tomb. It was a cave with a stone laid across the entrance. 39 “Take away the stone,” he said.

“But, Lord,” said Martha, the sister of the dead man, “by this time there is a bad odor, for he has been there four days.”

40 Then Jesus said, “Did I not tell you that if you believe, you will see the glory of God?”

41 So they took away the stone. Then Jesus looked up and said, “Father, I thank you that you have heard me. 42 I knew that you always hear me, but I said this for the benefit of the people standing here, that they may believe that you sent me.”

43 When he had said this, Jesus called in a loud voice, “Lazarus, come out!” 44 The dead man came out, his hands and feet wrapped with strips of linen, and a cloth around his face.

Jesus said to them, “Take off the grave clothes and let him go.”

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Lead Bellied Clouds

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IMG_0453IMG_0491The dark grey blue of cloud bellies move slowly east, sheets of rain stretching out, connecting sky to earth.  Thunder lumbers and bellows.  Rain hits hard on the roof.  A flash of lightning.  Quiet.  The storm moves on and the sky opens to blue.  To the west, to the south, the sun glints on the Spanish Peaks illuminating their vertical striations of rock and ridge, Beehive bright tucked behind.  Then shrouding of white, thin wisps of rain stranding from grey to light in the evening sun.

More thunder, cracks of power break open overhead, the darkness of more clouds heading this way.

“I don’t know how to do this,” I say to Dr. Cooper with a restrained wail in my voice, “I guess you have to just live each minute.”  There is always the before and after, a thousand points marked off, striating, separating then and now, what was, what is.  Eventually the “what will be,” becomes the “is.”  A hundred thousand test results, countless days and hours and minutes for the heart to beat hard with suffocating thud, anticipating the blade coming against your throat.  The wave rips you off your feet, dark weight pressing down on you, flailing, desperation to right yourself. Gasp of air and crashing wave grinding you down again and again.

Quiet.  Eery, odd, quiet.  Calm.  Flat face.  So this is how this goes.  This is how minutes amass to hours and days, months into years.  So this is how death comes.  This is how the thievery of your child’s bursting life gets stripped away, paint ripping in shreds from boards exposed too long in harsh weather, the slow erosion of flesh, the silent march of invasion.

Dr. Eagan, the PI (principal investigator) of the WT1 T-cell trial said Allistaire’s chloromas just amounted to too much disease to have hope that the T-cells would be successful, at least at this point.  In addition to the 6-7 chloromas in her spine, sternum and pelvis seen on the last PET/CT, four out of two hundred cells tested from her bone marrow aspirate showed Allistaire’s MLL (Multi Lineage Leukemia) mutation according to FISH (Fluorescence in situ hybridization).  The Flow Cytometry test showed 0% detectable leukemia in her marrow.  There was not even enough disease in the chloromas for corresponding masses to show up on CT.  Only about 5 years ago there would have been no detectable disease anywhere – there was no Flow Cytometry and PET scans weren’t used for leukemia.  Even a year ago Allistaire had never had a PET scan, only CTs to look for chloromas.  We would all think she was cancer free, in remission.  That was then, this is now.

Since we couldn’t move forward with the T-cells with any hope of success, the goal is to see if we can get her in a better spot.  Her heart is still far too weak to endure any intense chemo.  The accumulation of hard chemo has killed muscle cells in her heart that will never be replaced.  They are dead.  There is nothing new to replace them, only the hope that the surrounding cells can compensate for their loss.  The very weapon wielded against her cancer has cut her through, has permanently wounded her.  This is why there is no transplant on the horizon.  It is for now, off the table.  There is no plan to move forward with a transplant.

So Dr. Cooper, after much thought and consideration recommended the course of treatment that we have chosen to pursue.  She began five days of Decitabine last Friday which will be followed with three doses of Mylotarg (generic name: Gemtuzumab) on days 6, 9 and 12 of this round.  Gemtuzumab is an antibody which is bound to the chemo molecule, ozogamicin, which then binds to the CD33 antigen receptor on the cell surface of myeloid cells (which is the cell line that is cancerous in Acute Myeloid Leukemia).  Once the Gemtuzumab antibody binds to the CD33 antigen, the whole molecular complex moves inside the cell where the cytotoxic molecule, ozogamicin, kills the cell.  “Calicheamicins (of which Ozogamicin is a derivative) target DNA and cause strand scission. Calicheamicins bind with DNA in the minor groove, wherein they then undergo a reaction analogous to the Bergman cyclization to generate a diradical species. This diradical, 1,4-didehydrobenzene, then abstracts hydrogen atoms from the deoxyribose (sugar) backbone of DNA, which ultimately leads to strand scission.[6] The specificity of binding of calicheamicin to the minor groove of DNA was demonstrated by Crothers et al. (1999) to be due to the aryltetrasaccharide group of the molecule.”  I included that last bit from Wikepedia because I love the wild intricacies of our flesh.  And because I’m sick and tired of people offering me simplified cures for cancer.  Essential oils do not cure cancer. Juicing doesn’t cure cancer.  Cancer is a beast of a million, trillion heads with thousands of faces ever-changing, mutating, hiding and lunging out again to strangle the life out of you.

If you read about Gemtuzumab, you will see it has a dark past and was pulled by the FDA in 2010.  Allistaire is actually only able to get it on a compassionate use basis.  However, questions about the trial that caused alarm over its perceived toxicity and lack of efficacy, have shown that it may not have been the right move to pull it.  It has remained available in Europe and more recent trials have shown promise.  Allistaire will receive her first dose this Wednesday.  The primary concerns are immediate allergic responses like anaphylactic shock which she will be pre-meded with Benadryl and longer term concerns for her liver including VOD (Veno Occlusive Disease).

….That was Monday, today is Saturday.  In the week preceding Monday, Allistaire, Solveig, Sten and I drove east on I90 all the way home to Bozeman.  Dr. Cooper supported us going home for a visit – Allistaire’s first time home since she left in October.  Sten took the girls to clinic on Wednesday morning, July 1st so I could pack without them knowing in case labs were bad and we’d be thwarted at the last moment.  But labs were fabulous and when the girls opened the door, Allistaire asked why all the bags were packed on the floor.  “We’re going home to Montana for a visit, sweet girl.”  She was beside herself.  She couldn’t articulate her amazement and joy.  I’d say she was flabbergasted and it was the best.  I loved that joy.  After staying the night in Spokane as we have done so many, many times we continued on east through a land that all cells of my skin, eyes, hair, fingernails all sought to soak in, like dear friends with whom you have long yearned to visit – blue of Lake Coeur D’Alene, marshy grasslands before Cataldo in Idaho, my great big hill I plan to climb one day – a hill already turning yellow in summer’s heat but great and white in winter’s cloak and shocking purple in spring with billions of flowers of a name I don’t know, that curve of rock that repeats pinks and purples of setting suns, a great boulder over green water – a swimming hole I imagine diving into its cool deeps and drying out in the warmth of the rock, tumbling great rounded groupings of rock like a Flintstone landscape over Homestake Pass, the river bottom with Cottonwoods in Whitehall and up that great curve of road that will soon bring my eyes to rest on the Bridgers in the distance – the mountains that are mouth to my home, to Kelly Canyon with its aspens, Rocky Creek, Bridger Creek, magpies and coyotes, black bears and deer, scores of red-winged black birds calling their eery beautiful cry in morning and evening, pairs of sand-hill cranes who sound as if they have mistaken Montana for Africa.  There a multitude of colors of grass like waves moving in the wind over the contours of the land, punctuated by the silvery blue of sagebrush, that wondrous smell of moist coolness of night soaked up in their leaves and released like blessing.  At long last we were home, home.

Every joy paired with splitting pain.  The familiar strange smell of our house built in the 70’s.  Waking to light on the Spanish Peaks, light on leaves and flowers and the great evergreens on the hill, piercing blue of summer sky.  The feel of smooth tile underfoot as I stumble to my bathroom at night – no handicap bar just lush toilet paper.  Spying Allistaire sitting on her closet floor playing with her toys in the morning, her sweet blonde head ascending the stairs to greet the day.  Birdnest ferns and mother ferns, variegated leaves and leaves pink, leaves with purple, plump sculptural succulents and fuchsia of orchid petals, light broken in pieces of rainbow color by the prisms in the windows, the delectable breeze moving up the canyon and occasional ring of wind chimes.  Sitting down together for pancakes, four in a row along the kitchen counter.  Sending laundry down the shoot, into the wash and taking it out to the line to dry in the already hot day.  When I went into the garage I broke down.  Fishing poles and life jackets and bikes and buckets and pairs of little shovels and bug catchers and gardening gloves with childish patterns, hiking boots and a bike rack – a life once lived.  A life stalled.  A life paused.  A life cut short?  I think of going to Cliff Lake last year and my heart breaks open.  How desperate I am for the smell of campfire and the negotiation of how many marshmallows are reasonable.  I pant for Hyalite, for the simple extravagant pleasure of driving up that road and seeing water ringed by mountains, of packing coolers for picnics and the heft of a pack on my back as we ascend through the forest.  I watch the girls out the kitchen window, they head to the thicket of bushes where they made a fort last summer, the little blue bucket having finally been removed from the branch where it hung for months.  They play long with a caterpillar, lovingly making it a home to enjoy and hit jackpot when I find what I told them was a baby mouse, but I now think must have been a vole.  They carry it back and forth with gloved hands, tender in their care and wonder.

We had a wonderful week all together and time with family.  On her last evening home, we celebrated sweet Per’s third birthday.  Allistaire rode the tricycle in her yellow dress with great blooms – a french girl’s dress.  Up and down the sidewalk she went.  At last it was time to say goodnight, but not just goodnight, goodbye.  And I watched as simple hugs and goodbye’s were exchanged and suppressed the desire to cry out, to yell – “do you not realize you may never see her here again?”  Every joy sat side by side with the fear that these days would never be again, that I was witness to the lasts of many things, things simple, things mightily beautiful, treasured beyond all else I possess.  Next to the image of her yellow dress and happy face in the waning light sat deep sadness that she was alone, no one to play with, a child who has so seldomly been able to play with her peers, with really any children at all.  The older two, Solveig and Haaken, were off on their big kid adventures and Per was enamored with the little neighbor girl.  Next to the image of her that night, an image of seeming lighthearted joy, sat images of Carly’s face with tumors bulging, pressing tight and purple and shiny taut against the skin, eye distorted.  I saw Benton’s face deformed by numerous tumors that contorted his features.  I saw his face laying in a casket as I filed past, tears streaming.  I knew I had seen something that terrified me.  Something I wanted to ignore, to disregard, to cover with more plausible explanation, but I turned back to it over and over and over, examining, questioning – what do I see there?  Something seems off.  Her right eye, something is not right, something is not normal.  What is it?  What am I seeing?

Sten drove her back to Seattle on Thursday so she could begin chemo on Friday.  He came to Allistaire’s appointment with Dr. Cooper with a list of questions I had, questions with answers relayed and more questions lobbied back.  Nestled in amongst the questions of did we really know if Allistaire’s cancer expressed CD33 and how do you know how many days and on what days to give Mylotarg, was the question, do you see something off with her right eye?  Yes, ptosis, a droopy or falling eyelid, an effect on the muscles of the eye.  Sten’s voice on the phone, “He ordered an MRI.”  “Oh God, why?  What is he thinking it might be?”  Later Dr. Cooper and I talk on the phone and he was concerned.  It could be a tumor pressing on nerves in her spine or in her brain.

For days Solveig and I were alone.  Just the two of us.  Just like old times.  Times when she was my little buddy and we went everywhere, just the two of us.  How dear she was to me, how overlapped with my life.  Then I had a miscarriage, a DNC, months of trying to get pregnant again, fear of miscarriage all over again.  Sorrow, fear, acrid poisons seeping into the crevasses of my heart and mind, weighing down my finger tips and shoulders.  Sober.  A turning.  I couldn’t laugh as easily.  Other private wounds and weeping added one to the other, layers pressing down.  Desperate cries to the Lord, a turning to the Lord like never before.  My first tastes of Christ as my very life, Christ the very fuel of my cells, the brightness of my eyes, my longing, my aching need for Him and the sweet, sweet knowing of really tasting the beauty of the Lord.  Sober.  Deep expanses opening up, being broken open down into the very core of myself.  A fundamental tearing, sinews strained and snapping, bleeding out, faint.  In these four plus broken years I’ve felt too weak to love Solveig as she deserves, as I long to love her and gosh, oh man do I love that girl.  I hunger for her eyes, her giddy laugh, her brown ringlets she desperately wants straight, her skinned bruised legs from play, the magnetic irresistible draw of books, of stories for her budding mind, her unstoppable creativity, the ever request for a back rub.  I love Solveig Kailen Anderson and I have missed that girl.  I have missed so much of her life because of all this with Allistaire.  When she was only as old as Allistaire is now, we sent her to Montana to live with her grandparents while I fought alongside Allistaire in the hospital.  The first relapse meant 8 months away from home and four plus more months of constant week-long trips back to Seattle.  This relapse it’s already been 9 months with no end but the worst in sight.

For three weeks I had the joy of being with Solveig, the most time I’ve spent with her in all these nine long months.  When at last Monday came and loomed as the day I would lay down to sleep knowing something more, something of that eye, I talked with Solveig.  I attempted to prepare her for what may be coming.  Dr. Cooper called around 5:30pm.  It’s not in her brain, but there is a 2 1/2 cm mass of leukemia in her right sinus.  It has begun to erode away the bone.  The tumor, the chloroma, is putting pressure on the muscles which operate her right eye, that’s why it doesn’t look right.  Right there.  Right there smack in the middle of my little sweet girl’s face dwells an insidious tumor that threatens to take more, to distort, to ravage, to gnaw.  There is also a very small one in her left sinus.  Dr. Cooper knows of children in which the leukemia eats away the bone into the brain.  Why Lord?  Oh God please, please don’t take her this way.

With shoulders slumped I came to face Solveig, to tell her this latest revelation of the onslaught of Allistaire’s disease.  I asked her, gently pleaded, be kind to your sister.  You don’t know how many days you may have with her.  Don’t fight over toys.  Treasure her, for one day we may have no medicine left to stop her cancer.  One day we may need to bring her home to this house to lovingly surround her as she dies.  I tell Solveig that she will not be the same girl she once was.  She may not be able to walk.  Her face may be distorted with tumors.  Her eyes may not work.  Will she be able to speak?  The imaginings are so brutal.  It just ravages my heart to imagine this for her.  Oh God it hurts, it hurts so bad.  Solveig is silent and then sobs heave and tears stream.  I hold her close and grieve time lost and a possible future without her sister.  How I so loved the thought of two sisters growing up together.  Solveig by herself, just another sorrow, another gaping wound.

The thing is, I can see on the other side of these brutalities.  I can imagine a life filled with joy.  I can imagine being close to Solveig, years ahead together.  I believe that there would be a day far off in the future where losing Allistaire wouldn’t decimate every day.  But to get there, to walk the possible road ahead, oh how overwhelming, how utterly horrid.  It is like facing the blackest tunnel, believing that it will eventually open up to light, but Oh God, how far, how long?  You think, I can’t do that Lord, I just can’t bear the loss of my sweet little girl – you think this is some sort of barrier to it actually happening.  I look at her little face, with that one eye askew, having many, many times a day to face that beast that is taking her.  I love her.  My whole flesh cries out – I love her TOO much!!  I just can’t lose her.  But neither is my love sufficient to hold her.

For twelve days, I soaked up Montana.  I brought my bike and at long last made friends with it.  I actually now crave being able to get on that seat, feet clipping easily into the pedals and heading out onto the curves of my dear Kelly Canyon.  I imagine the many adventures that bike opens up to me.  Morning after morning I went out into the land with vast expanse of sky opening up overhead.  Glory.  Absolute resplendent beauty.  My sweet mother-in-law, JoMarie, so generously gave me her bike, an orange bike, a bike built for Obliteride, a bike to carry my flesh into God’s wondrous creation and a means to raise money to heal the sick.  I had a fitting done at Bangtail Bikes in Bozeman and then it really became mine – it is now aligned to my body, to my outward self, propelled by the inner.  Then Wednesday morning, as the first light shone blue behind the Bridgers, Sten took me to the airport.  We embraced hoping not to see each other before planned in August, desperately hoping some new horror would not rise up in the next few weeks.  Back to the battlefield, back to a strange life of seeming ease where I regularly drink Starbucks and sit around, but just below the surface, if you have eyes to see, is an effort of epic proportions, an unyielding fight, a straining, a grasping for life.

I returned to Seattle on Wednesday morning because Allistaire had an echocardiogram and cardiology appointment scheduled in addition to her first dose of Mylotarg.  I went straight from the airport to Ron Don to drop off my suitcase and then walked as fast as I could to the hospital to make it in time for Allistaire’s labs.  How strange to wake in my bed in Montana and so suddenly and utterly cast into a different world.  The best news of the day was that Allistaire’s heart has gotten a wee bit stronger!  Her ejection fraction rose from 29 to 36 and her shortening fraction from 16 to 21!  It felt like finally being able to breathe a bit.  But blast, just as we’re making some progress with her heart, her cancer is on a rampage, spreading in terrible places with still not much to combat it.  Later in clinic she received Tylenol and Benadryl as pre-meds for the Mylotarg.  Allistaire promptly fell asleep for the next four hours while I finally had a bit a lovely down time.  Thankfully she had no reaction to the infusion and all seemed well.

After ten hours at the hospital, we finally made it back to Ron Don and I was straight worn out, having gotten up at 2:30am Washington time.  Having slept so long, Allistaire completely missed lunch and now I had only a short bit of time to get dinner and meds in her.  On top of it, about 8:30 that night, I noticed she felt hot and the thermometer read 102.6.  Well, they were expecting this right?  This is why I was given a third dose of Tylenol to give her as instructed at 9:30pm.  The truth was I was wiped out and dreaded the fiasco of having to call the Hem/Onc Fellow to report the fever which I knew would result in being sent to the emergency room for blood cultures and possibly admission and antibiotics. Dr. Tarlock had warned me on Tuesday night that she may need to be admitted on Wednesday since her phosphorous and potassium were rising, signs of tumor lysis.  She may need to be monitored, but her labs had improved on her own and we had skated by.  But not calling in about the fever was a major failing on my part, really a huge mistake for any parent of a child with cancer.  We finally went to sleep after she threw up a wretched medicine twice – a medicine meant to bind with potassium.  I already had a laundry bin full when she had diarrhea twice as well and I had to change the sheets.  In between all the wakings that night, I continually took her temperature and watched it steadily descend to normal.  It was just because of the Mylotarg I told myself.

We were back to the hospital Thursday morning at 8am for electrolyte labs.  So here’s the deal, when chemo destroys cancer cells, the cancer cells lys – they die and break open spilling all their guts into the blood stream.  This is tumor lysis and it is detected by rising levels of potassium, phosphorous and uric acid.  It becomes dangerous when these electrolyte levels rise steeply, beyond the limits of what the kidneys can process.  Then you see the creatinine and BUN (Blood Urea Nitrogen) levels rise which indicate injury to the kidneys and the potential for kidney failure.  High levels of potassium can also cause arrhythmias of the heart.  So when Allistaire’s labs results returned this past Thursday morning, it was game on time.  Dr. Tarlock and Dr. Cooper were amazed to see overwhelming evidence of tumor lysis with all levels skyrocketing.  We were going to be admitted.  Then the plan intensified with measures being taken to have an Interventional Radiology surgeon install a second central line into Allistaire with the aid of Cardiac Anesthesia for the purpose of her beginning short-term dialysis immediately.  The goal was to respond quickly to this acute kidney damage and prevent kidney failure or long-term kidney damage by taking all of the burden off of the kidneys.  Because of Allistaire’s heart failure, her heart would not be able to endure the huge amounts of fluid that would be necessary to help the kidney’s flush out these electrolytes.  And because the kidney’s were already hurt, they could not endure the assistance of Lasix to remove the fluid.  So really, dialysis was the best option.  By 3pm we were once again in the ICU, this time in Forest level 5 room 321, exactly one floor down from where we spent 80 days in the ICU before.

In the time we waited for everything to be arranged, Dr. Tarlock consulted with cardiology about how much fluid Allistaire could handle on her own and she began receiving just 60ml an hour of saline.   To lower Uric acid levels, she was given a dose of IV Rasburicase.  She was also given Sevelamer to bind with phosphorous.  The problem is, Sevelamer can only bind with phosphorous in the gut, not in the blood stream.  Because Allistaire’s phosphorous was so high, Dr. Tarlock feared this would not be enough and we would need the aid of dialysis.  At last we were settled in our room in the ICU.  Yet when the labs drawn at 2pm came back, everything was trending in a much more positive direction due to the interventions already taken.  About ten minutes into a fascinating conversation with the Interventional Radiologist about collateral veins that a young body like Allistaire’s form when other veins are damaged, the ICU attending came in to say we were going to hold off on dialysis for now and continue to monitor labs.  It ended up being a crazy short and remarkably easy ICU stay.  Basically Allistaire just watched movies, got her meds and some IV fluids while I tried to get food in her and grumbled that I couldn’t eat in the room.  Because Allistaire was scheduled to get her second dose of Mylotarg on Saturday, we were just going to stay inpatient through Sunday with frequent labs to quickly deal with any issues if they should arise.  Friday morning we were to transition upstairs to the Cancer Unit except that they had no rooms available.  Finally on Saturday afternoon, we moved upstairs to the Cancer Unit into the radiation room – a room specially designed to give MIBG radiation to neuroblastoma patients.  It is a lead-lined room with most surfaces being stainless steel.  It’s not the most cozy room and the bed is about a foot to short due to having to accommodate the thicker lead walls.  But it meant getting the show on the road and I didn’t care.  I just wanted to get the Mylotarg in and get out of the hospital.  At long last, on Sunday afternoon we burst out of the hospital into the blaze of a 95 degree day, having completed the second dose of Mylotarg with absolutely no issues, no fevers and labs still looking great.

Yesterday, it was back to the hospital for labs and possible platelets.  I was pretty sure Allistaire would need them because of the small purple pricks of petechiae (tiny broken blood vessels) mixed in like a new wave of freckles on Allistaire’s cheeks.  A single round purple bruise adorned Allistaire’s forehead right between the eyebrows like some new-age tilak mark, in this case having bonked her head on the bar of the Target cart which she was eagerly driving when it rammed a shelf.  Sure enough, her platelets were 5 and so we spent the morning at the hospital getting her all tanked up.  Today we head back into the hospital again for labs and her third and final dose of Mylotarg.  Tomorrow, yet again, for the twelfth day in a row, we will be in the hospital for her clinic appointment with Dr. Cooper.  From there…well, we wait for her marrow to eventually recover, hope no infections get her and eventually plan to do another bone marrow biopsy and PET/CT to see how things worked.  After that?  Who knows.  If she were miraculously clear of cancer, we might be able to proceed with the infusion of modified T-cells (this is not a transplant).  If she has a partial response to the Mylotarg, it may make sense to try another round of it.  If there is no response or her disease has progressed, well, it all depends…of course we would investigate all our options for other treatment or the woeful possibility of being done.

Honestly, the next several weeks terrify me.  Obliteride is coming up – only 17 more days.  I wonder what life will look like as I ride that day.  By the way, I reduced my route to the 25 mile because I just haven’t had the time to train as needed to make the 50 mile enjoyable.  Three years ago on the afternoon before Obliteride, I was told that because Allistaire had disease after transplant, that she had a mere 5% chance at survival and probably wouldn’t even live 6 months.  I was decimated, inside and out, that day as I rode on my old mountain bike.  Last year, I physically had a hard ride, not being prepared for the 50 mile, but was propelled with determination to finish in light of all the pain and hardship Allistaire had endured.  But I rode that day with hope – having had Allistaire declared cancer-free only two months prior.  This year, who knows.  These are very scary times.  The Obliteride folks had invited Allistaire to be part of the Friday night kick-off party, but as her disease has progressed, I’ve had to say no to this, not knowing where things will stand on August 7th.

A little girl, Melissa, that I knew through friends, died of AML a week ago.  Last night, my friend Kiesha and I talked as she got back labs in Missoula.  It looks like Stevie has once again relapsed with AML and they will head back to St. Jude’s today or tomorrow.  As I was praying for her yesterday, knowing she was trying to get labs because of all of Stevie’s bruises, I put myself back in that place of waiting for news of possible relapse.  You have at long last returned to the magnificence of a “normal” life.  You gaze at your child in a way that no parent of a healthy child can fully imagine – your whole self rejoices at the smallest normalcies, ordinary becomes spectacular pleasure.  But when signs creep in that something is awry, the stinging is fierce and unrelenting.  It is like watching a black storm on the horizon, you see it coming and you know it is about to engulf your life and twist and spin and splinter you and your beloveds until at long last you are spit out on the ground, broken, with the life pummeled out of you.  It is a tsunami that sweeps you away from your life in an instant and you are put back in that place of fighting every day for life.  To just simply live is all you want.

I long for a better way.  I long for a day when cancer isn’t a ravager, a likely sentence of death.  I long, oh I ache, for a day when the way you fight cancer doesn’t cost so much life and destruction of beautiful body parts like ovaries, and hearts and brains.  I see my child.  I see the children of my friends.  A few have been released back into glorious life, but many stumble around from the horrific effects of radiation to the brain, limbs cut off, hearts faint, and some in caskets.  Cancer is the number one killer of children by disease!  I have asked many times, and I will ask again.  There are so many, many worthy places to invest your resources, your money.  But I am asking if you would consider giving it to further cancer research?  One in two men and one in three women will get cancer in their lifetimes.  You may be the one desperate for a better way, and if not you, it is almost certain that someone dear and close to you will be aching for a better way to eradicate, obliterate, cancer from their life.  Cancer is personal, it comes in close to each of us.  Will you join us in putting our resources to stopping this foe?  One hundred percent of all the money given to Obliteride directly funds cancer research at Fred Hutchinson Cancer Research Center.  Do you live in Bozeman?  Do you know that the Cancer Center at the hospital is part of the SCCA – the Seattle Cancer Care Alliance which is a collaboration of Fred Hutch, the University of Washington and Seattle Children’s?  Giving to Obliteride directly opens doors for clinical trials that you in Bozeman may need!

Thank you SO much to the over one hundred different people/couples/groups that have already given to further cancer research in my name through Obliteride!  Yesterday, you helped me surpass my goal of $15,000.  But I know there are many of you still who profess your love for us, your desire to support us in any way, who have not yet given.  Would you consider honoring Allistaire’s fight in this way?

Click HERE to donate to Obliteride and directly speed up cancer research!

The research is taunting.  It is moving at such an amazing pace, but I often fear Allistaire will just barely miss the thing that would at long last put down this beast of cancer.  You don’t want to hear it.  You think I’m crying wolf.  And oh how I long for you to be right.  I long for the Lord to once again make a way through for Allistaire.  I know, I absolutely know He is able to heal her.  I listened to the Nigerian woman tell me to pray, to fast, to believe, to test the Lord and demand He heal her as she has done for her son who is getting a transplant for Sickle Cell.  She proclaimed her faith in the Lord’s ability to heal, over and over and over.  But that seems too simple to me.  I just don’t believe in some magic equation where enough people pray or my faith is somehow the right degree of strong and then out pops what I want.  God is too big for that.  He is too vast and complex and when it comes down to it – He is just OTHER than me.  He is utterly “other’ and His ways are not my ways.  I don’t begin to know how my little life and my little child are woven into His great plans.  But the thing is, I do, I do believe they are part of the bigger picture.  I don’t believe our “littleness” equals lack of significance.  And what is the purpose of my life, of Allistaire’s?  Is it not our great joy, fraught through with pain, to direct attention, to illuminate more the beauty of the Lord?  God does not need more glory.  He is not some pathetic being needing me to build Him up.  No, WE need to see the glory of the Lord!  We humans need to see Him for who He is that WE MAY LIVE!  That is why I yield my life to the glory of the Lord – because I love, because I know my own great need to be engrafted into His life blood, that I MAY LIVE!  And not just live, but live an abundant, eternal life.  And in turn, I am honored that my life may in some small way direct attention to the radiance of Christ as the only source of life!  May I be so audacious as to link my life to Christ’s?  Is this not exactly what Christ did on an epic scale?  He suffered and He laid down His life that life might spring up from His death!  This is the “otherness” of God!  Out of Christ’s death, the ground soaked by His blood, God overcame sin and death!  He resurrected the life of Christ and in so doing made the way for redemption!  Is there anything more wondrous, more mind-blowing, more exploding with glorious beauty than this?  THIS is what I am invited into!  In my own power, this awful road with Allistaire is just suffering, is just agony, is just death. But God is at work!  He is alive and HE will take this heart of mine bleeding out as He may not remove this cup from me and He will accomplish life!

I lift my eyes to these wonders.  Sometimes I am too frail and weak to even open my eyes and I need the Lord to come down low and tenderly care for me.  I went to church with Jo in Bozeman and heard God’s word preached for the first time in a long time.  I was reminded of God’s otherness. I was reminded of the way He blasts my rational understanding to pieces and shows me a better way, the way of life.  I could hardly sing the worship songs.  I just cried.  I cried because the last time I was in that place was to honor Jens’ life and to mourn his death.  I cried looking at the man playing the drums, wishing so desperately it could still be Jens.  I cried because the words of those songs were just too much.  “There may be pain in the night, but joy comes in the morning.”  Oh Father, oh Father, how long is this night?  The joy seems ever so far off – is there even a glimmer of light on the horizon?  Words about how our life is not our own, how we give it to the Lord.  That sounds nice.  You can agree to that right?  Your life is the Lord’s.  How lovely.  You sing it out with beautiful voice.  Sobs fill my throat.  Oh God, oh God, I do yield, I do lay down at your feet, but it is agony, it is ravaging, it feels like brutality.  I cry out with Christ.  My God, my God, why have you forsaken me?  But I am given light on the horizon, the smallest hint of turning, I am given hope that this night will end.  I read in God’s word beyond that black moment on the cross.  I read of resurrection, of redemption, of light unyielding.  I stake my life in the hope of God’s promises.  I have tasted of the Lord and I will not turn back.

Where shall I go from your Spirit?
Or where shall I flee from your presence?
If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
If I take the wings of the morning
and dwell in the uttermost parts of the sea,
even there your hand shall lead me,
and your right hand shall hold me.
If I say, “Surely the darkness shall cover me,
and the light about me be night,”
even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.  (Psalm 139: 7-12)IMG_0391 IMG_0403 IMG_0411 IMG_0418 IMG_0428 IMG_0441 IMG_0447 IMG_0449 IMG_0450 IMG_0452 IMG_0456 IMG_0465 IMG_0468 IMG_0469 IMG_0470 IMG_0479 IMG_0480 IMG_0481 IMG_0511 IMG_0521 IMG_0524 IMG_0530 IMG_0535 IMG_0539 IMG_0541 IMG_0543 IMG_0548 IMG_0549 IMG_0551 IMG_0555 IMG_0562 IMG_0565 IMG_0574