Tag Archives: PICU

Transplant, Haplo-Style


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




IMG_2964Delayed Gratification.  Joy Set Before Me.

You can endure a lot…if, if you see a glimmer of light.  If you can grasp onto that shred of hope.  But if it’s all for not, if nothing will come of all your straining, all your loss and sacrifice, it’s ever so much harder to press forward.

But…you catch that glimpse…you sense before you that the light is coming and it invigorates you to lean into the endeavors before you.

I don’t know if Allistaire will make it out of this alive or not.  There is so much good I can easily imagine if she lives.  There is also good I can imagine if she dies.  If she dies, I pass over that line.  I enter a territory I have never yet had to tread.  If she dies, I will dwell there, with them, with Beth, Merle, Rachel, Julie, Devon, Ryan, Darliss, Janett, Shannon, Susan, April…I will share in their company and that would be good and I would have an understanding that at this point is only imaginings.  I cannot let go of my sweets but it hurts my heart to not be able to draw yet closer to them in their places of pain and hope.

For now, we are here, here in the dark but with a glimmer.  For me the glimmer began with remembering the statement that, “I would be flabbergasted if your insurance approved this transplant.”  This was voiced by a woman who has been integral to coordinating all the details of transplants for years.  And you know what, Blue Cross Blue Shield of Montana has approved Allistaire’s transplant.  Flabbergasted has happened and it was a sweet, tangible reminder that the “unlikely,” has happened so many times for Allistaire – good and bad.  What shouldn’t have been, has.  So if the doctors say she probably won’t recover the needed heart function, well, they could be right, but they might not.  Flabbergasted can happen.  It is a reminder that God will do what HE will.  There is SO much to tell, so much in fact that I’m sure I will fail to get it all down.

When did the shift begin?  On February 15th Allistaire finally showed evidence of her bone marrow recovering after 38 days at zero.  Then there was a solid week of serious pain as her white blood cells flooded her gut and got to work on healing.  Sometime in the few days preceding our especially difficult care conference, as her ANC continued upward, her pain began to subside to the point that she now needs only one dose of pain meds every several days, if at all.  On the day of the care conference something wondrous happened.  Her BNP (Brain Natriuretic Peptide), dropped below the terrifying lab value of greater than 5000.  This has been its approximate path:  Over 5000, 3800, 3200, 4000, 2600, 1400, 972, 1040, 1320, 1090, 2350, 552, 1100, 749, 1070.  The big blip back up to 2350 was most likely due to getting blood the day before on her birthday.  A transfusion of blood resulted in a big increase in fluids and blood is a very heavy fluid so while the heart loves blood, the big extra dose caused a bit of distress in that narrow window.  I cannot convey to you how glorious it is to have that wretched number dropping!  I have no idea if it’ll keep going or if it will settle at some point.

Another development is Allistaire’s overall activity and joy level.  The girl is coming back to herself!  I remember trying to get Allistaire out of her bed after a week in the PICU to have her walk to the door of her room – it was such a great and painful effort.  In reflecting back to the days after Allistaire’s transplant and being in bed so much, I knew the sooner we could get her walking again the better.  The scope of my abilities to directly help Allistaire through all of this are so limited, but I knew I could help her get moving.  So what began as one walk a day from the bed to the door turned into a lap from bed to couch to door and back to bed, three times a day.  We kept increasing the distance and the frequency.  Thankfully, the Infectious Disease doctors approved the same activity plan she had up on the Cancer Unit which meant we could finally leave the room as it was getting absurd to try to make progress within the confines of her small room.  We are now up to a lap around the PICU and Cardiac ICU five times a day.  That is equivalent to a half mile a day.  She giggles now.  She jokes with the doctors and nurses.  She plays around in her bed and kicks and seems to have no limitation on her movement.

Last week Dr. Yuk Law, head of the Heart Failure team, was our attending cardiologist.  One of my greatest joys has been seeing him watch Allistaire with a look of disbelief on his face.  My impression of him, which has been supported by that of others, is that he is a very even keel man.  As he watched Allistaire frolic in her bed, he pointed out that she was moving a lot.  “Well, yeah,” I thought,”that’s Allistaire you’re looking at.”  I then went on to tell him about her progress in walking around the Unit.  With a look of surprise, he asked me to clarify that she was, what, out of her room, walking around?  Yes, yes, around the unit five times a day, I reiterated.  You see, she is literally the only person in the whole ICU who is walking around.  He wanted to know if she got out of breath.  “Not even a hint of out of breath.”  He said he was astonished.  He watched to see her as she finished a lap to verify my report.  With a dropping BNP and such incredible physical activity, he discussed the possibility of trying to wean her Milrinone, but he wanted to wait for Monday’s echocardiogram.

Flabbergasted.  Astonished.

On Thursday, March 5th, two weeks after her last discouraging CT, Allistaire had another.  This CT would look for fungus in the sinuses and chest with the hopes that if it were not there, we could stop the Micafungin, which is a very broad spectrum IV anti-fungal, and return the prophylactic, Fluconazole.  They would also look at her gut to see the state of Typhlitus.  If she was all healed up, they could finally end over 50 days of broad spectrum antibiotics.  The CT showed that the sinuses were completely normal and clear.  Moving down to her chest, it says the “lungs are clear.  Previously noted predominantly sub pleural groundglass opacity and consolidation has resolved.  The proximal airways are patent.  No pneumothorax or pleural effusion.”  Previously noted small right pleural effusion from 2/20/15 has resolved.”  Did you get that?  Things look normal.  Issues have resolved!

It goes on: No enlarged lymph nodes (a common place for her cancer).  The liver, spleen, gallbladder, biliary tree, pancreas, adrenals, kidneys and bladder are normal.  No pathologic mass identified.  Previously noted multifocal bowel wall thickening involving the colon and rectum has resolved.  The bowel is now normal.  The appendix is normal.  What sweet relief!  Her whole gut has totally healed, there is no fungus and you know what, even previous evidences of heart failure in her lungs and liver were not mentioned because they are not there!  I was so elated!  This also meant two more IV meds are done.  Over the preceding week, we had begun to transfer IV meds to be given by mouth as she could handle it.  As of today the only IV meds Allistaire is on is Milrinone and Lasix.  Of course, she takes a total of 20 doses of meds by mouth each day, but a number of these are just preventative.

The other big development is that Allistaire has begun to eat.  I joyously charged into Pagliacci Pizza last Monday evening to declare that my girl, who had not eaten in nearly 60 days, wanted cheese pizza and lemon San Pelligrino.  She ate with a zeal of old.  Then she threw it all up.  Too much too fast.  Over the last week she’s struggled with nausea but continued to have an appetite, even requesting a hotdog the other morning before 8am.  Tonight’s request is chicken quesadilla, rice and chips from Chipoltle.  The nutritionist was able to reduce the calories in her TPN (IV nutrition) and get rid of her lipids all together. Over the weekend, Dr. Law decided to have the team completely cut the TPN given that oral fluids have less of an effect on the heart than do IV fluids.  I won’t deny that I was surprised and frustrated by this rapid adjustment.  Getting Allistaire to eat is a time-consuming and often very challenging, stressful process, especially when it all ends up in being thrown up.  Nothing is more defeating.  A typical meal requires 2-3 hours of tedious intermittent bites and prompts to drink.  By last Friday she was probably taking about 500 calories in a day with a total daily goal of 1,200 calories.  So much of it is hoping Allistaire won’t be over nauseous (she is on anti-nausea meds she gets every 6 hours) and strategy – what will give her the most calories that she can also keep down.  (By the way, this is not a request for input on this matter.  Believe me, I’ve had countless conversations, and innumerable attempts at a variety of options.  We are three plus years into this food battle and I admit, advice at this point is not welcomed.)  Yesterday the girl got 1,300 calories in.  I was amazed!

Today we’ve had to make a few food adjustments due to an “acute kidney injury.”  As a result of all the Lasix, which pull off fluids and are thus quite hard on the kidneys long-term, and an electrolyte imbalance, her BUN (Blood Urea Nitrogen), Creatinine and potassium levels have crept up and were quite a bit too high today.  Because they monitor all of these levels daily, the doctors are able to catch issues early and make adjustments.  A number of meds were held this morning that impact potassium levels and fluid load.  Also, I am not giving her milk or orange juice today, both of which are high in potassium.  They retested labs this afternoon and thankfully her numbers have trended down now nicely.  Most likely she can resume her regular meds tomorrow.

The issue with her kidney’s also prompted a hold on the planned wean of Milrinone, originally set to begin today.  Allistaire had her echocardiogram on Monday.  It was a bit deflating.  Dr. Hong, the attending cardiologist this week, said that while the EF (Ejection Fraction) is up to 21% from 11%, she says her heart looks about the same.  We had a lengthy conversation which included looking on the computer at her echo from back in December when her EF was 65%.  Of course there was a marked difference.  Dr. Hong seemed cautious to not be too optimistic and over-promise.  This was where we had a bit of tension.  I’m not looking for grand results in two weeks time.  I’m looking for a shred of hope that shows she is going in the right direction.  I’m looking to take stock of every victory no matter how small.  I know it is no guarantee of what will come, but I have to live out these days and I need that fuel of hope to keep me going.  Dr. Hong did say that her right ventricle, which had looked fine until the last echo two weeks ago, had improved, as had the function of the mitral valve.  They haven’t recovered fully but they are better than they were before.  Hopefully this recovery will in turn aid the recovery of the left ventricle.  The cardiologists will meet today to discuss med changes including the possible addition of another med and the likely wean of Milrinone, set to begin tomorrow.

I have never felt so weary, so utterly tired.  The planned wean of Milrinone will be incredibly slow this time.  Last time they weaned from .5 to zero in a week.  This time they plan to wean .1 per week, starting at .75 which means a seven and a half week wean to zero, five times slower than before. This is wise because we all want her body to have the very best shot at successfully coming off.  Yet, as I calculate out the very, very best scenario it would be three more months until transplant, which assumes the ability to keep her cancer in remission, a successful wean and sufficiently improved cardiac function.  This is a lot to assume.  Nevertheless, if you add these three months to the 100 days post transplant one is required to stay in Seattle for, we’re looking at a minimum of six more months.  I’m packing up my wool sweaters to send home with my mother-in-law, JoMarie.  But I’m wondering if the seasons will turn again and again with us still here and I may need to wear them again in this place.  Daunting.  So very daunting.

Friday was Allistaire’s 5th birthday.  It was a crazy, whirlwind of a day, fun and emotional.  The point of celebrating a birthday is to remember back to that day your beloved came into this world and to express thanks for each year since.  I could never have imagined when Allistaire was born that this fight against cancer would exist, much less so consume her days.  Four out of five birthdays have either been in the hospital or under the shadow of treatment.  We did nothing for her second birthday but be glad to be home after leaving the hospital the night before at 11:30pm when her last dose of chemo for that round had been given.  Her third birthday was spent in the hospital soon after her first relapse, just the two of us. Her fourth birthday was a grand event at home, only two days after she had her Hickman line removed at Seattle Children’s marking the end of treatment but with the looming fear and wonder of what the coming year would hold.  For me Friday was a day to be in both wonder and in sorrow.  It is wondrous to me that her life has been extended over and over and she is here with us for another birthday.  And my heart is heavy with grief that her little girl years have been so constrained.  I think of the lives of other little girls and the contrast is so stark – like a sudden punch in the stomach.  I am so keenly aware of the fact that this could be her last birthday, that her life ever hangs in the balance.  Tears threatened throughout the day.

I also nearly cried as we walked into her room that afternoon.  A sweet woman, Libby, from Soul Illuminations, had volunteered to come and take photos of us so we had headed down the hall to the Quiet Room where the visuals are better.  When we came back to the room, the bed had been shoved to the far wall and the room was full of joyful faces eager to celebrate Allistaire and see her delight.  Sarah from PT (Physical Therapy) came with her parachute and a group was bouncing a beach ball a top the parachute.  There was music and clowns and cakes and too many presents and just a whole lot of love.  Again I had to hold back the tears – that she would be so loved, so celebrated, that so much planning by the hospital staff would go into making this day special for her, well, it was overwhelming in such a beautiful way.  And it was a special joy to have Solveig and JoMarie surprise her for her birthday.  Ah, two sisters giggling.  There is nothing better, nothing.

When Allistaire was two weeks old I took her to see Caroline, her great-grandmother who was in a nursing home.  We arrived to find Caroline in her group time with fellow Alzheimer’s patients.  Two of the women asked how old Allistaire was.  I told them, “Two weeks.”  “Wow, just two weeks,” they exclaimed with ooos and sweet faces of cherishing delight.  A minute later they would ask the same question, which yielded the exact same level of surprise and delight.  This went on and on.  Same question.  Same answer.  Same response.  It was comical in one sense, but I realized that this question yielded a wonderful answer. What about when these same women asked about their husbands who had likely passed away.  They had to meet the news of their beloveds’ death over and over, with the same shock and sorrow.  It’s not quite the same for me but there is a fair amount of similarity.  There is no clear course.  I look at a little girl so full of life and joy and exuberance and some neon sign next to her head flashes, “probably not going to make it, probably going to die, don’t get your hopes up.”  I look at this test result and hope.  I look at that test result and fear the worst.  One doctor emphasizes, “kid’s are resilient, they surprise you all the time,” and another keeps a straight face and offers no hint of optimism.  I feel flung to and fro, bashing up against this likelihood of death over and over as I swing back around.  It is not just a day-to-day existence here but a reality that from morning rise to evening’s setting sun the whole nature of things can change.

No matter how normal this has all become, no matter how cheerily I decorate her room, I constantly meet with shock the dark presence in the room.  But I’m looking for joy, joy in the day and joy to come.  I am fixing my eyes on the God who counts the number of hairs on my head and who determines each day, hour, minute, molecule, ion.  It is His to choose where these days lead.  It is His tale to tell.  And what is my life anyway?  Is it so very essential that I check the boxes I’m told relentlessly make up a good life?  My life doesn’t fit into those wee constrained boxes and neither does my God.  His ways are not our ways and there is thrill, there is invigoration, there is anticipation, there is leaning into these days.  I am on the look out for what He will do.  I am on the look out for my God who gave me this small, loving, beautiful, hilarious, strong, feisty, wondrous girl.  Thank you Father for the abundance you have given.  Thank you for better days and for a glimmer of light.IMG_2848 IMG_2860 IMG_2867 IMG_2870 IMG_2873 IMG_2876 IMG_2883 IMG_2889 IMG_2890 IMG_2891 IMG_2892 IMG_2893 IMG_2895 IMG_2896 IMG_2897 IMG_2904 IMG_2909 IMG_2911 IMG_2929 IMG_2933 IMG_2935 IMG_2937 IMG_2939 IMG_2941 IMG_2949 IMG_2951 IMG_2952 IMG_2954 IMG_2956 IMG_2957 IMG_2958 IMG_2962 IMG_2963 IMG_2968 IMG_2971 IMG_2977 IMG_2981 IMG_2984



IMG_2817Bewilder.  Is that the right word?  I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching?  I am out here, cast in the land between lands, this already and not yet, ever tension.  But she is so alive?!  “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?”  All heads nod.

I didn’t want to cry.  I didn’t want to have my heart tearing out of me be seen as with audience by these eight.  I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting.  I studied the tree tops beyond those panes of glass, never seeing them.  “Her heart could suddenly stop.  She could have an arrhythmia.”  Gutteral cry, “Oh God.”  It was not hard for the images of doctors swarming her to come vivid.  Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location.  “Code Blue Ocean 8 in front of the lab.”  “Code Blue River 5 room 307.”  I have seen the flood of doctors and nurses responding like blood gushing a wound.  Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl.  I know if it came to this it would be the end.  While they might be able to bring her temporarily back, there would ultimately be no return, no recovery.  But yes, yes, yes try to bring her back because I want to gather those who have so cherished her.  I want that time to surround her with faces who hold her dear.  I want that chance to say good-bye one last time.  I want to blow her kisses.  I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all.  At some point in the future, they will try to wean her off the Milrinone.  Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function.  So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience.  If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her.  It would foretell the end.  If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time.  It will take time.  The question is whether or not her cancer will allow such time.  As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow.  The extremely poor condition of her heart continues to make sedation unnecessarily risky.  The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image.  She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that.  Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image.  The advantage of the PET scan is that it shows the active metabolic cancer.  Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough.  For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry.  While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission.  I can’t imagine doing nothing further.  So once her ANC reaches 1,000 she will begin getting Azacitidine.  Today her ANC is 348.  Neither Clofarabine or Decitabine are options because they suppress blood counts too much.  At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge.  She has no reserve.  The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant.  Another upside is that it can be given outpatient.  If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective.  However, radiation is given under sedation for someone as young as Allistaire.  You must lay completely still in the exact position they place you in.  Radiation is incredibly precisely targeted.  A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation.  Allistaire would be left totally alone in that room with the foot thick lead door.  I really don’t know if she could do it.  If Allistaire is not in remission, every single thing changes.  If she is not in remission, she is done, done.  There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial)  This trial requires that Allistaire’s ejection fraction be 35 or higher.  Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial.  The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell.  Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs.  The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices.  My face lit up with possibility and terror at such a possibility, such an extreme measure.  It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover.  I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire.  Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon.  The short of it is that a VAD is not an option for Allistaire.  You cannot go through a bone marrow transplant with a VAD.  The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy.  The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD.  In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured.  It has been compensating a very long time and likely cannot bounce back.  A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for.  The thought of a heart transplant is insane to me, insane.  But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ.  The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years.  That sounds like a long time.  But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart.  Yesterday the cardiologists wanted an X-ray of her lungs to look for edema.  They put the little lead heart on her groin again and it was like a knife twisting in me.  In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!”  I’ve already yielded her ovaries.  I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities.  I know her growth and bones have already been harmed.  She has already lost so many days as a child, and now her heart too will be gouged out?  It is like cutting off someone’s leg and saying, be happy, you still have one leg.  And then, oh wait, we must cut off that other leg and an arm.  Limbless, you are thankful to be alive.  But you have been harmed you see?  You have been ravaged.  The exchange for your life has cost so very much.  But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road.  “I don’t know how to do this,” my voice bleak.  “No one knows how to do this,” he told me.  It is not natural that a child should die before their parent.  While it happens often enough, it is not the natural order.  He was very gracious toward us.  I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options.  Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day.  That is all I could possibly ask for.  I just need to know that she is being fought for, that she is not being given up.  And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on.  It is not yet time to lay down and rest.  We press on, we endure.  We put our face to the wind and cry out in anguish and fierce determination.  There may be a way through, there may.  There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers.  I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours.  Thank you.  Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ.  Thank you for sharing our burden.  Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice!  For we are calling out to you Oh GOD!  We do not understand your ways.  What you are doing is here is so unclear, it seems so dreadfully wrong.  How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god.  I will stand in worship, though the fire consume me.  Am I fool?  Many will nod, yes.  But you see, I have seen the Lord.  I have heard His voice.  I choose to turn my face to Him.  I will again fix my eyes on Him.  I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me.  For the joy that will come, but the joy too that is, that is in this present time.  I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days.  I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence.  It is not about manners, it is about love, love.  I seek to love.  I seek to love Allistaire.  I seek to love Sten and Solveig.  I seek to love each nurse, doctor and person that I encounter.  For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research.  Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way.  If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire.  The details can be found HERE on Facebook.  The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday.  Please do not send any birthday gifts.  The truth is, she has enough in the way of toys and such.  If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl.  Prayer is not some magic equation where enough prayers by enough people yields the desired result.  Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”IMG_2804 IMG_2809 IMG_2824 IMG_2822 IMG_2813 IMG_2802


Stagger, Tremble


IMG_2751We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.  (2 Corinthians 4:8-9)

Hard pressed.  Perplexed.  Struck down.  The weight of sorrow presses so heavy on my brow.  Sensations so familiar, so brutally common.  How many times have I looked out the windows at this scene, the sky, these clouds ever in motion, wondering, desperate for a way through.  I have never had a stalker, never been abused.  But I taste the mineral tang of terror reinforced again and again, blood on the tongue.  The framework of my days is forced to contort yet again to fit these new truths, these numbers that rip and snare.  My heart exposed from tearing flesh.  Assault, violence, silent snuffing out with dark weighty force.  I weary circling round and round with this foe.  Oh hard pressed, gravity compressing my chest into the ground, threatening, suffocating, no relief.  Relentless.  I catch a breath and am forced down again.

This morning I saw it, that golden light skipping, glinting, light gleeful on current and blue so blue.  Green of trees and of grasses, bending like wave, accepting, receiving contortions not offered but forced by wind, yet mild and soothing in the acceptance.  That bend in the river approaching Ellensburg, I anticipate, I am eager for that curve and strain to catch sight of it.  Scene after beloved scene framed by car window, speeding by, brief but so known, so loved and familiar.  Great hill covered in snow, in extravagant purple drapery of flower, the color of candle warmth in autumn, I know thee beloved rise of land.  And I yearn for you.  My whole being angles forward in desire, attraction.  Without thinking, with gut response, I swoon as I see us flying over asphalt, east, east, oh home, dear home.

I will myself to turn, to be present, here, now, in this place.  Day by day I must walk.  Another day with numbers that do not change.  A BNP that rises here and bobs briefly down, never nearly low enough.  Every day the same, the same, the same, “no data,” the labs read.  “No data.”  There is nothing, not a single white blood cell in 28 days.  No sign of marrow stirring.  Silence. Absence.  Cavern empty.  And yet, she has changed.  That girl thrust so violently under dark water, held down as she struggled and flailed and at last went limp and silent, she is rising, rising.  Light returning to her eyes, giggle to her mouth and wiggle, joy, willingness to interact.  Allistaire Kieron Anderson is emerging from this ragged fray, this assault.  I gaze at her as light in perfect streams enters through window and passes over her face, illuminating a surface of perfect softness, multitudes of tiny blonde hairs.  Peach fuzz.  Irresistable to the touch, the softest soft, made more beautiful by sensational curves of cheek, perfect little nose and round landscape of chin.  She plays and talks and wants me to see what she’s done, what she’s created.  I swoon and am drawn in, her irresistible pull of delight.  I adore her, my whole being arches forward, captured by the beauty of her sweet spirit.  I cherish her.

Heart failure.  Like deep thunderous, violent thud of sledge-hammer, the words pound with brute force, threatening to explode my ribcage.  Heart failure.  I tell Dr. Hakens how I hate to hear those words.  “Well, you can’t sugarcoat failure.”  Another blow.  Monday’s echo was devastating.  The door to transplant slammed closed.  Her ejection fraction was 29 and shortening fraction 12.  The wind knocked out of me and suffocating flee, flailing to grasp some bar of hope, some explanation that in its concreteness demonstrates finiteness and thus capacity for domination.  What must be do to stop this torrent of loss, I wail?  Are we doing all we can?  We push through, we push, we walk forward.  There must be a way, there must.  This cannot be it.  Oh don’t let this be it.  How can we accept defeat.  How can we just let this bright force slowly fizzle and die?  All we have known for three years is FIGHT!  How now can we surrender; raise the white flag and say enough?  Death as end point has always, ever been there – stark on the horizon.  A black silhouette impossible to disregard, impossible not to recognize.  But my visions of that last great battle have always been a fight to the last breath, a fight with every last weapon, where if death comes, it comes because at long last we are deplete of weaponry and cancer has won.  But agony, swamping sorrow to still have great weapons to wield and yet, simply no strength left, mere collapse.  This image wounds in a uniquely awful way.  I breaks my heart a fresh.

We have devised a two-part plan.  With the direction of Dr. Hong, our cardiologist, her cardiac medications are being aggressively adjusted.  She needs to be on Enalapril, a drug she has taken the past two years but has been off of the last mouth because it must be taken by mouth, not having been an option due to her typhlitis.  Apparently, Milrinone, the heart med she has been on, doesn’t work in such a way as to enable the heart to rebuild function.  It is more of a stabilizer and optimizes blood profusion.  This has been essential with the great fluid load of her infection and need for healing of her gut.  In order to begin taking Enalapril, the team of doctors decided to push up the timing on her CT which ended up happening late Monday evening.  Thankfully the results of the CT were great and indicated “almost complete resolution of typhlitis,” and only “minimal residual thickening of the bowel wall.”  Thus Tuesday morning began with her first dose of Enalapril at half the max dose.  That night her Milrione was weaned down from .47 to .3.  Yesterday, her Enalapril was increased to its max dose and Milrinone turned down to .25.  The goal is to also add on Carvedilol today and Spironolactone tomorrow.  Carvedilol blocks beta and alpha-1 receptors which results in slowing “the heart rhythm and reduces the force of the heart’s pumping. This lowers blood pressure thus reducing the workload of the heart, which is particularly beneficial in heart failure patients.”  Spironolactone is a diuretic than helps reduce fluid retention.  Enalapril is an ACE inhibitor.  ACE (angiotensin converting enzyme) converts angiotensin-1 into angiotensin-2 which causes constriction of the blood vessels.  As an ACE inhibitor, Enalapril blocks this action thus reducing blood pressure and easing the work load of the heart.

Right about now I want to jump up and cheer and sing and dance and smile, smile, smile.  I am constantly, non-stop blown away by nature.  The complexities, the intricate inter-relations – oh I just swoon and swoon and am enamored of it all! Yes, I hate, hate, ragingly despise that the heart of my sweet girl has been so weakened that it might cost her life.  But I cannot deny the wonder of it all.  The spectacular, pure extravagant beauty of God’s creation.  He made this!

The second component of the plan to get Allistaire’s heart back in a condition sufficient to move forward with transplant, is to delay transplant.  At this point, her transplant is scheduled for March 19th.  This gives very little time for her heart to recover as these medications are not necessarily fast acting.  Before I even talked to Dr. Gardner, I knew this was likely the course we must take.  At the very bottom of the list of downsides of delaying transplant, is it means another month at the very least out her in Seattle.  It has now cost me July, oh July, sweet singing green exuberant July, perhaps Montana’s most perfect month.  The bigger issues with delay are that there is a now a longer window in which unexpected harm can enter; a mere cold could throw everything off.  More significantly, the rash of measles outbreaks which are largely connected to unvaccinated children, could literally be the death of her.  The measles virus can linger for 1-2 hours after someone infected leaves the area.  It hangs in the air, impossible to detect and thus avoid.  In a person with a normal immune system, measles can be awful.  In a child like Allistaire with little to no functioning immune system, it could very easily kill her.

Secondly, there is ever the beast, ever the threat of being devoured by cancer.  Time is a scarce resource in the life of a person battling cancer.  Time is a luxury.  If Allistaire’s cancer is currently suppressed, it means nothing about what may happen in the coming weeks.  Being undetectable in no way means it is nonexistent.  Next Tuesday, 2/17, rather than being transferred to the Bone Marrow Transplant Service as originally planned, she will have a bone marrow aspirate taken.  If we are still in the PICU (if she hasn’t weaned off Milrinone), then the procedure will be done in her room with the ICU attending providing anesthesia.  Otherwise, it will likely be done in the operating room where they have better support than in the procedure room of the Hem/Onc clinic.  For the last 28 days her marrow has not produced one blood cell.  In her last round of chemo, her marrow began to recover after 14 days at zero.  This significant delay is likely a combination of being pounded hard twice in a row by this chemo and her severe, traumatic infection. Looking in her bone marrow will tell the doctors if there is any recovery happening or in the worst case scenario, her marrow is so packed with leukemia that no healthy cells are able to be produced.  I think a packed, cancerous marrow seems unlikely given that in the past two years, whenever even a very small percentage of disease has been present, there have been blasts in her peripheral blood.  Thankfully, there continues to be no evidence of blasts.  Depending on how her marrow looks going forward, the proposed month’s delay in transplant could require more chemo (probably Decitabine), though perhaps she wouldn’t need anything.  As is simply ever the case, we wait.  We wait and see.  We wait.

Every single day feels like an impending death sentence.  Every single day a new number can indicate the tide has turned once again.  This morning’s BNP, which they are only looking at twice a week now, was substantially increased to 1420.  Everyday begins with these numbers.  It’s like being constantly pushed around, shoved hard this way and that, ever a precipice waiting to swallow.  Waiting is hard, really, really hard.  But I have discovered a secret, a mysterious way of God.  He loves to make us wait.  Not because He is cruel, but because He loves, because His aim, His hope for us far supercedes our own.  We dwell on this earthly, temporal plane, wailing in pain, thrashing about, desperate for things to work out as we so desperately hope.  We have set our eye on our desire immediately before us.  But God…He is over all, under and around, above and below and on all sides.  His view engulfs our little view.  He waits.  He waits with us.  He restrains His hand because He is holding back the tide to make room, to provide space in which we are invited to face Him, to wrestle, to grab hold of His extended, merciful gentle, powerful, loving hand.  He allows the tension of waiting because it is often in this electrified static that we have most bountiful opportunity to turn to His voice, to seek His face.  This is His aim.  This is His yearning, His craving, His unbridled passion, to draw us to Himself.  It is not that He is unmoved and cold toward my bleeding heart.  It is not that He is powerless to change my circumstances, in a flash, in the blink of an eye.  It is that He has clarity of vision.  He declares that life comes solely, only, directly from being bound to Him.  Love is patient.  Translated in the King James, it says love is long-suffering.  This is the very first descriptor of love.  God is love.  God is long-suffering.  He suffers with us in our sufferings.  He endures with us.  When at last will we come to the end of ourselves and see that He offers us life.  Life abundant.  Life eternal.

Father, thank you for drawing out this suffering, for expanding its parameters.  For You have filled this space with your bounty, your halting beauty, with light unearthly.  I swoon as I fix my eyes on You.  You have patiently walked by my side and I rejoice to know that no matter the days ahead, you will never leave me nor forsake me.  You satiate and I come running for more, more of you Lord!  I come weeping, weeping, calling out for mercy.  Mercy Lord!!!

If by any chance your heart breaks knowing how broken Allistaire’s heart is from all of her harsh treatment…if you wish for some better option for her…if you wish her cancer could be cured without destroying her…if you wish there was just a way to put an end to cancer, to obliterate it…

There is something you can do.  When we join our resources together, we really CAN make a difference in the options available to children like Allistaire.   By joining me in raising funds for cancer research at Fred Hutchinson Cancer Research Center, you are furthering, accelerating the chances for life for kids and folks like yourself, like your mom, your brother.

Click HERE to join me in donating to cancer research as I participate in Obliteride again this summer.

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IMG_2733This morning I spent nearly an hour on the phone with Lisa Getzendaner, the Unrelated Donor Coordinator, getting a lot of information on the road ahead.  I am daunted by the incredible number of details that all have to fall in place.  It really feels like we’re on a bullet train, speeding toward our destination of transplant, with a frightening number of steel gates currently down across the rails.  They may open.  They probably will.  Lisa has twenty years of experience with this work and I have confidence in her abilities to coordinate the massive endeavor before us.  The gates may open, but the thing is, every single gate must open to get where we so desperately need to go.

Allistaire came to the ICU because of a severe infection in her gut.  A few comments in recent days have opened my eyes to just how serious her typhlitis was.  On our behalf, the resident asked the surgeons if Allistaire could start having some little bits of ice.  When she brought back the answer that she could indeed, she also brought news that the surgeons were surprised that Allistaire was able to make it through this gut infection without needing surgery.  I knew that for them to operate on her would have been extremely dangerous given her complete lack of white blood cells, so to hear that they really thought she would need surgery impressed upon me the danger she was in.  When I relayed this perspective to Dr. Gardner, she stopped and looking me in the eye, said that the way Allistaire’s colon looked on the first CT was the worst she’s ever seen.  She sure did a good job of not letting on about how precarious her condition was.  Apparently, had her bowel perforated, a likely uncontrollable infection would ensue.  This is in fact how my grandmother, Lillian, died.  She died fast.  I sat in a plane on the tarmac in Atlanta, trying to get to her, when she died.  I am now much more aware how optimistic my assumption was that she would make it through this, that she would be fine.  Thank you Father that you preserved her life.  Thank you to each of those donors who took a serious chunk of their time to donate their granulocytes.  Thank you amazing team of doctors who so expertly and rapidly diagnosed the likely problem and initiated an aggressive and effective plan to support her little defenseless body through this sepsis shock and resulting tremendous insult on her heart.

Now that her typhlitis is so wonderfully on the mend, Allistaire’s primary issue remains her heart.  Dr. Gardner talked to Dr. Bleakley, the transplant doctor, who said that her ejection fraction must be 45 or higher in order to be approved for the transplant protocol we so desperately hope for.  Since her last echo that showed an ejection fraction of 23, the team has continued to carefully monitor her fluid intake and output, adjusting everything from the concentration of meds and TPN, to giving and timing lasix to pull of more fluid.  They are doing everything in their ability to ease the burden on her heart.  As Lisa said, if her heart function doesn’t improve enough, this “could be a show stopper.”  She has continued on Milrinone.  Thankfully, her BNP (a measurement of heart distress) has been trending downward and was 583 this morning.  A normal BNP falls in the range of 0-90 and hers started at 2350 from the first time they checked it.  Additionally, her SVO2, which is the level of oxygen in her blood that returns to her heart after circulating through the body, has risen to 80 which the attending doctor told me this morning is perfect.  “Perfect,” I have not heard that word used describe almost anything with Allistaire lately.

The general plan is to keep Allistaire on the Milrinone until her blood counts have recovered in order to provide optimal blood profusion to her gut, thus aiding healing.  We will also wait until count recovery (ANC of 200) before allowing anything to go into her stomach.  It will be a process to get her gut working and her eating well enough to provide her the necessary calories and thus to come off the TPN.  It is very possible she will get a feeding tube given how small her stomach will have shrunk.  The feeding tube would allow constant low level food.  This is a bit of a bummer for me as we have managed to keep her off a feeding tube since she was diagnosed.  Oh well, something else new to learn.  Her blood counts remain in decline.  Today she is getting platelets (which she seems to need every 2-3 days) and red blood.  Her white blood count remains zero.  Today is the 17th day of zero white blood cells despite getting daily GCSF shots to stimulate her marrow to start producing cells again.  I sure hope her marrow perks up soon because so much of her healing depends on her ability to heal up with the white blood cells.

Regardless of these challenges to overcome, planning out the details and timing of her transplant must proceed.  Allistaire will be transferred to the BMT (Bone Marrow Transplant) service on February 17th.  I will have an Arrival Conference, the next day on the 18th.  The purpose of the Arrival Conference is to review the process before us, what we know about Allistaire and what testing still needs to be completed. Then for the next two weeks, a great deal of testing and evaluation will take place to determine if Allistaire’s disease and overall health is stable enough to move forward with transplant.  She will likely have a bone marrow test February 19th or 20th.  Once all the data collection is complete, there will be a “Data Review Conference,” on March 3rd or 4th.  Assuming everything is in order and we are able to proceed, Allistaire will begin conditioning on March 9th.  This will involve 4 days of TBI (Total Body Irradiation) in which she is sedated and radiated twice each day over at the University of Washington which is just a few miles away.  She will then have five days of chemotherapy which includes 5 days of Fludarabine and two days of Thiotepa.  There will be one day of rest and then the actual transplant, the infusion of the donor cells, is set for Thursday, March 19th.

March 19th feels so far away.  This whole process is taking a month longer than I had ideally hoped.  Yet this may be for the best as it gives Allistaire lots of time to recover.  Her heart, marrow and gut have been severely injured.  This morning the new attending Hem/Onc (Hematology/Oncology) Dr. Hawkins, reiterated that Allistaire’s typhlitis was very bad.  The timing is being dictated in large part by the openings available in the radiation schedule and apparently the T-cell manipulation “takes such a huge amount of resources,” that they can only schedule one per week.  This time will also allow for finalizing details of payment for transplant.  Because both the transplant and the subsequent modified T-cell immunotherapy we hope her to have after transplant are Phase 1 trials, Lisa said she would be “flabbergasted,” if Blue Cross Blue Shield approved them.  It looks like our hope rests with Washington Medicaid and ultimately Social Security Insurance based on the view that Allistaire’s cancer constitutes a disability due to her long time hospitalization.

Behind it all, however, is the promise that should all else fail, Seattle Children’s Hospital Foundation will cover the cost of these trials.  This boggles my mind.  Her last transplant cost $1.1 million.  Sometimes I shudder at what Allistaire’s care has cost.  I look at my one beloved child and know she is not of greater value than each of the thousands of children who die every day in developing countries.  It is not fair that so much is given to her.  The Super Bowl helped add a little perspective.  Thirty seconds of Super Bowl advertisement time costs four million dollars.  That’s about what it has cost to keep Allistaire alive the last 3 years.  She is not worth more than the thousands of children’s lives that could be saved by four million dollars, but she is sure worth more than a measly 30 seconds of TV add time.  What a world.

Another steel gate is in the hands of the donor herself.  She has to consent to both the large volume of cells needed in order to complete the depletion of the naive T-cells for the transplant and for the genetic modification of the T-cells for the trial after transplant.  She has agreed to donate and has agreed to the time frame requested but she still needs to give these specific consents.  There is not one single thing in the universe I can do to impact her decision.  In a stringent effort to in no way coerce the donor, this woman knows absolutely nothing of Allistaire’s condition, her age, the severity of need – nothing.  So many gates barring the road before us.  Most of this post was written yesterday morning long before results from Allistaire’s echo came in.  The day ebbed by at a painfully slow pace.  I felt I could not leave the room because at any moment the cardiologists would come in with news of her heart.  Yesterday the weight of sadness lay heavy.  Day became evening and then night with still no word.  The nurse graciously harassed the resident in hopes she would in turn harass the cardiologist for results.  Corrine, the resident, came in just before 9pm beaming once again.  She made the cardiologist repeat himself several times to be sure she heard the number right.  “The ejection fraction is 45,” she said with nearly uncontainable smile.  FORTY-FIVE??!!!!!  “That is the exact number it has to be for her to move forward with transplant,” I told her with laughing, shocked joy.  God, who are you?  Really who are?  I know your face is just beaming, beaming with joy, with delight to bring us delight.  So what you’re saying, Lord, is that you have her in your hands?  What you’re saying is that this is not hard for you?  We need 45, well here’s 45.  Thank you Lord, Thank you.  I think we were all flabbergasted at that incredibly glorious number.

It has been 19 days since Allistaire was transferred to the ICU, quite a bit longer than I had ever guessed we’d be here.  This is not how I envisioned this round of chemo going.  The funny thing is, just two days after her chemo, when she was detached from her IV pole and it seemed we had three easy weeks ahead of us, I thought, “God, this is what you have for us?  This seems too easy.  We never have it this easy.  Three weeks just to hang out and wait for her counts to come up?  Well, show me what you want this time to look like.”  Two days later she was in the ICU.  Today was a delightful day of progress.  The morning began with the removal of the NG tube in her nose that was used to pull out any stomach contents.  Then through immense protest and fear, the IV in her foot was removed.  These days she is literally terrified if you come near her with anything.  She knows she gets a shot every night and has had many painful experiences in the last two weeks.  Even her bath elicited cries of, “I’m scared, I’m scared.”  It was her first real bath in nearly three weeks and now she smells lovely and her cranium is extra shiny.  Lastly, we changed her dressing.  I am thankful for so much progress and the opportunity to get her up and trying to walk again.

The top picture is one Solveig drew last Tuesday after doing FaceTime with Allistaire and I.  This is Solveig’s view on Allistaire’s world.  It sobers me.  I’ve also included some fun pics from a joyous weekend recently that my two sister-in-laws, Jess and Jo, came out for a visit.  My mother-in-law has been here this weekend, giving me some nice breaks and enjoying time with Allistaire.

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PICU Day 2


IMG_2564Allistaire was so stoked for the big Seahawk’s game today.  She was cheering for Russell Wilson the whole time.  Okay, so maybe not.  But Sten and I had fun watching the game in between the many steps taken to move Allistaire forward with support through this process.  It was a busy day but overall calmer and more relaxed as Allistaire seems to be in a really good place.

A Foley catheter to drain off urine was inserted this morning. This allows for urine volume to be tracked very precisely which in turn provides more exact calculations of fluid intake and outtake.  Additionally, a probe component of the catheter provides the internal abdominal pressure.  Another fine feature of the Foley, is a precise and constant internal temperature that displays on the screen along with all the other numbers being monitored.  They are also now taking girth measurements which also allows the doctors to track changes with her abdomen.  So far we are encouraged that her abdominal pressure is normal.  Her urine and stool are checked for blood, as is the contents of her stomach on occasion that is drawn out by the NG tube.  So far there has been no sign of blood, though she has not had any stool as of yet.

Because Allistaire’s blood pressures have stabilized, they have added Milrinone which helps to dilate the vessels thus reducing the pressure the heart is working against to pump.  It also helps the heart itself with pumping so that there is greater blood profusion to the tissues throughout the body.  This should help the heart not have to work so hard on its own and provide more blood to her gut where there is tissue at risk of cell death, as seen on the CT. If you look closely near the bottom (slightly left hand side) of the CT image, you’ll see a small white ring with a dark gap on the upper left side.  This white ring and the white line beyond it show the thickened wall of the bowel and the dark spot may indicate lack of blood flow and thus necrosis.

Today they increased her transfusion thresholds, platelets going from 10 up to 50 and red blood from 21 to 25.  They want her to be in a strong position, especially with any potential internal bleeding.  Her hematocrit had risen to 41 from about 27, not because her marrow is making new red blood cells but due to her dehydration yesterday.  The blood was more concentrated, resulting in a higher concentration of red blood per the volume of blood.  This means it is a little difficult to accurately determine her true hematocrit.  They will take into consideration both her hematocrit and her fluid needs in determining when to give red blood.  This morning she was given a transfusion of platelets and this evening, red blood.

She will be given a GCSF (Granulocyte Colony Stimulating Factor) shot to stimulate her marrow to produce blood cells.  Without this stimulation, she would typically have zero white blood cells for the next two weeks.  Given the severity of this infection, Dr. Gardner (who consulted with not only Dr. Tarlock and Dr. Ho, the two AML docs here, but also with our beloved Dr. Pollard) wants Allistaire to have these shots to speed up the recovery of her marrow.  For myself, I have quite a fear of the GCSF shot.  When Allistaire first relapsed back in February 2013, her first course of chemo involved GCSF with chemo.  This was the round that on Day +16, she had blasts for the first time.  Dr. Gardner understands my fear but believes the benefits outweigh the possible con.  Based on her last bone marrow, there are no detectable cancer cells so in accordance with the idea that she has no cancer, the GCSF shots cannot obviously produce cancer cells.  If they are there, well, they’re there and there’s nothing to do about it.  Having her recover from this infection is the absolute highest priority.  The shot will likely be given every day for the next few weeks, around 6pm.  Those with other forms of cancer that do not originate in the myeloid blood line, are often given GCSF shots to help them recover more quickly.  Tomorrow evening she will also begin daily infusions of donor neutrophils which will likely make her sicker before she really gets better.

This evening Allistaire began getting TPN (Total Parenteral Nutrition) and lipids.  TPN looks like a big bag of urine but quite awesomely contains all of her necessary nutrients.  The lipids (fats) look like the purest cream you can imagine.  These should begin this evening as well. Each day she will also have her chest and several views of her abdomen x-rayed.  Today her chest x-ray looked  more clear of the bit of fluid that had gathered in her lungs.  I haven’t heard that there was any significant change shown in her abdominal X-rays.

The hardest part for Sten and I are the times that she is desperate to communicate with us and tries to speak but no sound comes out (the breathing tube goes right between the vocal chords).  This afternoon she was asking and asking for something to drink.  It is uniquely awful to tell your child they cannot even have a sip of water and to know that it may be weeks before she can.  When she had to get an IV placed in her foot in order to provide enough lines for all of her meds, she silently screamed, “Take it out.”  When only a half an hour later, the nurse had to give her the GCSF shot, her eyes again shot wide with terror and she was intent on telling us something we never could interpret.  I sincerely hope she won’t remember this time.  Thankfully I think they have truly found a great spot of balancing adequate sedation with her morphine where she is not expressing pain overall and sleeps a lot but is also very interactive and can answer yes and no questions and can ask for things like her blanket to be pulled on or off of her.  In one of the close up pictures, I asked her to smile.  It is barely visible in the picture but when you are with her you can very clearly see her sweet spirit.

It hurts to see her so debilitated.  On the other hand, I have felt mostly content and at rest with this process.  Dr. Gardner said that this is a bad case of typhlitis, which if you look it up, you will see is really not optimal.  She is very hopeful that she will be able to clear this infection in time and will be able to proceed with transplant as planned.  Despite all of the interventions, Allistaire is tolerating everything extremely well.  It reminds me so much of transplant where there was a lot going on and it looked very scary, but what was happening was well understood and they were able to adequately respond to her needs.  This sort of scenario is precisely why Allistaire stays in the hospital, “awaiting count recovery.”  Chemo is just one piece of providing for her in this fight against her cancer.

These days make clear what it is to be “immune suppressed, ” to be “immune deficient.”  This is what it looks like to be totally vulnerable and without defense.  This is the major downside to chemotherapy, it kills the bad guys and the good.  One day I hope for a means to destroy cancer that doesn’t come at the cost of my daughter’s ovaries, her heart, her bowel.  I get giddy imagining a day when little girls and mom’s and grandpa’s can get cancer treatment without putting them right in the way of other potentially life threatening dangers.  A few years back I read a fantastic book entitled, “Biomimicry: Innovation Inspired by Nature.”  Biomimicry is defined as, “an approach to innovation that seeks sustainable solutions to human challenges by emulating nature’s time-tested patterns and strategies.  The goal is to create products, processes and policies – new ways of living – that are well adapted to life on earth over the long haul.”  The author explains that most often we as humans use the “heat, beat and treat,” methods to create.  We use high heat, extreme pressure, and significant chemicals to create which in turn neither produces as quality products nor sustains the environment in which they are created.  Animals and nature, rather, use processes that sustain the surrounding environment and produce amazing products.  The abalone shell is one of the hardest materials on earth and is accomplished by an elegant laying down of hexagonal molecules in layers that don’t directly overlap.  An abalone creates it’s shell out of materials readily available in its own environment and in such a way that its environment is sustained.  This is not even close to what humans do to create steel.

I could go on and on about the many beautiful accomplishments of nature, but in our scenario, it is the immune system that gets all the glory.  The immune system is amazing at detecting and destroying invaders that would harm the body and it does it in such a way that the health of the body is sustained.  The immune system is the hope of future cancer treatment.  One day, we will no longer have to indiscriminately dump poisons into people with cancer in hopes that the pros outweigh the cons.  No don’t misinterpret what I am saying.  I am weary of a segment of folks talking about chemotherapy like it is “evil,” and should be avoided.  Chemotherapy is a phenomenal gift and has accomplished a lot of good.  Cancer is extremely complex, far more than the average person could ever imagine.  Chemotherapy, in many ways, is targeted and works in impressive and complex ways.  But alas, it is still so far from ideal.  But that “one day,” is already beginning.  The immunotherapy being developed is rapidly opening up amazing options for more precisely targeted cancer cell death, accomplished in such a way that the bodies own systems kill and clean up.  You guessed it, we need more cancer research!  Allistaire needs better options!  What about your kids?  What about your grandchildren?  What about your mom or yourself?  Cancer touches so many lives right in your little circle.  We need better options for ourselves and for those we love!

As today comes to a close, I am so thankful for what the last 24 hours has accomplished.  Sten is here.  I am thankful for his support and sweet Allistaire asks for him almost every time he leaves the room.  This evening she seemed quite upset after having to be wiped down and was crying little silent tears.  Sten and I tried so hard to understand the motions of her mouth.  Finally we figured it out.  She just wanted daddy to sit next to her and hold her hand.  What dear, sweet, unfathomably precious people God has given me.  IMG_2562 IMG_2565 IMG_2567 IMG_2570 IMG_2572 IMG_2573 IMG_2576 IMG_2580 IMG_2582 IMG_2583 IMG_2584



IMG_2560IMG_2559As of 8am this morning, Allistaire has been in the ICU.  It is amazing the contrast of 24 hours.  Yesterday, she awoke with cheer and joy and her ANC, (absolute neutrophil count), dropped to zero.  The ANC is the best indicator of the white blood cells available to fight any and all infection.  As of yesterday, she has been utterly without defense.  I have heard of what can happen when your body is without its natural ability to fight.  Now I have seen it.

While I am well versed in much of what has happened to Allistaire over the last three years, todays events have presented a number of challenges she has never faced and are new to my understanding.  Those out there who are medically knowledgable will probably find a number of flaws with my explanation, but I am doing my best to piece together what happened when and why and where we are now.

I will start by saying that Allistaire is stable.  She has never, ever been this sick and never had to be hooked up to so many things.  Currently she has 5 med pumps going, a breathing tube attached to the ventilator, three leads on her chest to track heart rate and respiration (breaths per minute), a transducer hooked up to her Hickman line to check her CVP (Central Venus Pressure) which is indicative of the volume of blood moving from the vessels of her body into her heart.  If her CVP drops, she may be dehydrated and need more fluid.  More on fluids in a moment.  Lastly, she has an Art Line, a special line that goes into the artery of her wrist in order to provide constant measures of blood pressure which is much more reliable than the blood pressure cuff.  Prior to the Art line being placed, her blood pressures were varying dramatically and were not providing sufficient and accurate info for the medical team to assess and respond.

In short, Allistaire has some sort of infection, most likely bacterial.  Over the past week since being admitted she has done incredibly well.  She never threw up, had an amazing appetite, was drinking so well that once her chemo was complete she was taken off of her IV and had tons of energy.  She would bike around the Unit so fast that I would have to constantly remind her to slow down.  On Thursday her appetite started to wane a bit and I was not surprised on Friday morning to learn that her ANC had hit zero.  She threw up her breakfast that morning but was overall fine.  Friday evening she began complaining of abdominal pain.  I assumed that she probably was beginning to have abdominal cramping from diarrhea as she did the last round of chemo.  However, around midnight, she spiked a fever which prompted the nurse to draw blood cultures which looks for any bacteria growing in the blood.  Her heart rate was high (170-180s) and so she was given a bolus of fluids, assuming she was likely a little dehydrated.  She was given two more boluses due to her heart rate remaining high and then a dose of Dilaudid to address the pain in her belly.

The hospital protocol requires a Rapid Response Team if three boluses of fluid are required in a set (relatively short), period of time.  This results in the patient being sent to the ICU.  Additionally, the Dilaudid caused her blood pressure to drop.  For the past three years, this very scenario has been described to me.  I have been told countless times that kids are resilient and look really great even in the face of illness until suddenly they can no longer compensate and it all starts to fall apart.  Due to the nature of the chemotherapy used to treat Acute Myeloid Leukemia, the patients bone marrow is completely suppressed, resulting in neutropenia.  The truth is, they can be very sick and you can’t even readily tell because their immune system may not be able to mount much of a defense.  For these reasons, kids treated for AML are kept inpatient far more while they neutrophils are so low and why we are required to go no further than 30 minutes from the hospital.

When Allistaire arrived in the PICU (Pediatric ICU), she was breathing very rapidly (about 100 breaths per minute), breathing shallowly, her blood pressures would periodically drop very low (down into the 20s) and she was quite agitated from pain in her tummy which was distended and hard.  Her whole body is puffy from fluid.  Her body is having an inflammation response to the infection which in turn causes her vessels to be leaky and the fluids to leak out into the surrounding tissues.  They continued to give her boluses of fluid and added on Norepinephrine which is a vassal presser to cause the vessels to tighten up and constrict, thus increasing blood pressure.  The doctors are referring to her situation as sepsis and that she is in compensated shock.  The primary goals are to address the bacterial infection itself and to assist her body in its great effort to respond to the infection by supporting her in a variety of ways.  The primary tasks were to get a more reliable means of obtaining blood pressures, aiding with her breathing, determine the state of her heart in response to all the fluid, to provide broad, sufficient antibiotic coverage and to determine by CT, what was going on in her gut.

In order to get a CT (Cat Scan), she needed to drink oral contrast which would then take two hours to move through her system.  While this was being accomplished, an Echocardiogram of her heart was ordered and discussion began on how the best ways to determine her blood pressure.  First a transducer was set up with her Hickman line in order to determine her Central Venus Pressure.  Initially this was not working properly and the decision was made to go ahead with prepping to insert an Art line.  It was also decided to put her on a CPAP machine which would more forcefully blow air into her lungs which would not only provide oxygen but also help keep her airways open.  In the midst of this time, she had her Echo conducted.  It took some work to get her set up and stabilized to be able to transport to radiology for her CT.  Once she returned from radiology, everyone was prepping for CPAP and the insertion of the Art line. Right about the time they were ready to proceed, Allistaire threw up.

Throughout the day, the attending PICU doc had discussed with me the possibility that Allistaire may at some point need to be intubated which means a breathing tube is inserted down her throat and attached to a ventilator which would ease her body’s burden and breath for her.  At one point the doctor noted how long Allistaire has been sick (as in the last 3 + years) and said that it was really our choice if we wanted to move forward with this intervention.  She was implying that we did not have to continue to intervene if it was just too much.  To be fair, she had never seen Allistaire outside of this setting and while I found the option appalling and repugnant, I think she was ethically trying to make our options clear.  It was a hard moment.  I also asked her if I should have Sten come out.  She said that while she does not anticipate this being the case and that it is highly unlikely, it could come to the point that they would not be able to extubate her which would mean that our time to ever talk to her again could be limited.  This was when I called Sten to look at flights and see when he could come.  I had no time to explain to him what was happening only that he should come.  After researching the options, he and his mom and Solveig began driving to Billings so that he could fly out to Seattle on the 6am flight and be here by 7:30 Sunday morning.

Once Allistaire threw up, the doctors decided it would be safest for Allistaire if they were to go ahead and intubate her.  The concern was that if she threw up while on CPAP, she could aspirate (throw up go into her lungs and cause damage), where as if she aspirates on the ventilator (which she later did), it would be caught by the “balloon” in the breathing tube and to then be suctioned off.  Additionally, an NG tube or a Salem Sump, was inserted into her nose in order to pull out anything in her stomach including fluid and gas.  The plan throughout the day continued to change as new information was gained.  Results from the echo showed that her shortening fraction had dropped from 32 to 20.  The increase of fluids was also causing her heart to be more floppy and less able to constrict.  This prompted the addition of epinephrine to help her heart muscle contract and in a way, counterbalance the effects of the norepinephrine.  After much preparation, she was sedated (not completely) and they then placed the breathing tube and got that all situated.  The doctor then moved onto the insertion of the Art line which was very interesting to watch.  He used a small wand with ultrasound to determine the location to best place it.  Once it was all set up, he put in a stitch on each side of the line into her hand to secure it into place.

The next bits to tackle were a consult from the ID (Infectious Disease) docs and the surgeons.  The ID docs reviewed all of her past infections and recommended a few changes to her antibiotic coverage.  She is now on Cefepime, Gentamycin, Linezolid, Flagel and Micafungin.  The results of the CT showed typhlitis as they suspected.  Possible reasons to do surgery would be if there were a perforation, obstruction or to resect portions of dead (necrotic) tissue.  However, because she has absolutely no neutrophils with which to fight infection and heal, the dangers of surgery often outweigh the benefits.  Thankfully there is no evidence of perforation or obstruction.  The CT did show a “marked bowel wall thickening of the Sigmoid Colon and the rectum and a mild thickening of the transverse colon. It is suspicious for neutropenic colitis.”

For now she is stable, blood pressures are stable and in a good range and she is much more comfortable.  They are watching her lactate level which is slightly elevated and can be a sign that her body is still working too hard.  The nurse has been able to wean her off both the norepinephrine and the epinephrine.  She will continue to be intubated for now and we simply have to wait for the antibiotics to do their job.  On Monday, and for the following 6 days, she will be given transfusions of neutrophils.  I had no idea that this was possible.  A donor, who is HLA matched with Allistaire, will be given a GCSF (Granulocyte Colony Stimulating Factor) shot that will cause their bone marrow to produce and release neutrophils which will be then collected, processed and given to Allistaire.  Cool huh?!!!

In this midst of this all, Allistaire has done a remarkable job dealing with all the invasion and discomfort. Until she was sedated, her little independent big-girl self, insisted on going to the bathroom in the little potty chair rather than in her diaper.  Throughout she has been very cognitively aware and articulate.  Her greatest frustration has been not being able to drink (no food or drink for now) and she absolutely HATED the CPAP mask.  It drove her nuts to not be able to rub Doggie’s fur up against her nose and such her thumb easily.  Even now that she is sedated, she is still doing well.  A friend visited and when Allistaire heard her voice, a smile passed her lips.  When Solveig said, “Hi Allistaire,” on the phone, Allistaire waved her hand.  The hardest part for me is that she can’t talk because of the breathing tube being positioned at her vocal cords.  It is so painful for me to watch her trying to talk, to communicate how she is feeling or what she wants and not being able to understand.  Thankfully, she is able to communicate yes and no.  There have been a few times when her eyes suddenly go wide and she looks afraid.  This hurts my heart for my girl, but she is pretty readily calmed.  I know my little fighter is in there and her tenacity is serving her well, even if we cannot hear her voice of defiance.

Yes it’s been a rough day, but man, this is the first time in three years that we have gotten to this place.  That in itself is an amazing provision.  I have total confidence in the PICU team and our sweet attending Hem/Onc doctor, Dr. Leger, stopped in multiple times to check in, including at nearly 11pm before she went home to her own family.  Allistaire has a lot of support right now but all seems well.  I am told that once those neutrophils from the transfusion enter her blood stream, they will go straight to the areas of infection and start to battle.  She will likely get sicker before she gets better.  There may be a cytokine storm (proteins in blood from cell death).  It could get scarier before we see better days, but this is what must come.  What gift to have so many people’s brains and experience and persistence come together to care for my sweet girl.  I am in awe at all that we are able to do to support this one small life.  Oh what gift that so few on this earth have ever known.  Life.  Life.  Beautiful life.  And beautiful body, so complex and miraculous.

I’m pretty tired and Sten should arrive early in the morning.  Lord, thank you that though we cannot foresee how our days will go, from morning to night they may swing dramatically, but you are not caught off guard.  You know the days before us.  Thank you for your provision of so many amazing people and crazy cool meds that can fight and care for Allistaire.  Thank you for that incredibly beautiful little girl that I can only love more every single day!