Tag Archives: typhlitis

Jan14

Transplant, Haplo-Style

Posted on January 14, 2016 by Conglomeration of Joy

You 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 blood

Mar29

Quiver

Posted on March 29, 2015 by Conglomeration of Joy

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I can’t tell you what it’s like to lose your child. I simply don’t know. But I can tell you what it’s like to walk through this world with your child’s life ever, ever hanging by a thread, ever threatened, the wolves snarling, the glint of teeth. I see the girl in her soccer uniform with her mom and little sister as I descend the escalator in Target. My legs weak and muscles quiver, drowning in some sort of chemical sorrow, trying to catch their breath. Such beautiful normal life. People out living their extraordinary, ordinary lives and I feel perpetually trapped on the other side of a glass wall. The little blonde haired girl sucking her thumb in the coffee shop, wearing the same tights I once bought for Allistaire, tights not too small to wear, just irrelevant in the world of the hospital. I walk through the clothing section for little girls, barbs pierce my flesh. I buy her clothes because clothes mean you are alive, you have a life. But I don’t buy a size up with a future in mind, even clothes that acknowledge the change of season only serve to declare her plight, a life lived inside where temperatures never change, wind never blows nor rain falls. I see people out in their yards raking, mowing, digging, flowers bursting and I envy, I envy. I long to be on knees, hands in dirt, pulling weeds, clearing the dead debris of winter and sinking flowers into soil. My life is lived in strange parallel, at moments seeming to cross over but ever tied to a rope threatening to pull me down, pull me under.

I have routines that on the surface create the ruse that there is normalcy, but these days are only normal because they repeat without seeming end. Weekends are strangely hard. They are a gift because they are a chance to be out of the hospital while my parents stay with Allistaire and I get two nights of unbroken sleep. But they are spent alone. Alone I go to the movie. Alone I eat at a restaurant. And I have chosen this. There are many who would join me but I have preferred to be alone because I so weary of the constant barrage of human interaction every day, all day and night at the hospital. I am desperate to flee from it and yet, I don’t want to be alone. I want to be with my family. I want to be doing ordinary things like waking up together in the morning, making breakfast, doing laundry, going to the grocery store, sitting in my chair by the window, sweeping up the incessant needles from the fir tree, making dinner. But I am cut off from these ordinary pleasures and so I pass through spaces, silent, appearing to be apart of the world of the living, but like some agonizing spirit, dwelling in the space between.

My mind feels gripped in a vice, pressure now intensifying, now releasing but ever-present. The numbers are relentless, my brain analyzing them ceaselessly, turning them over this way and that, holding them next to sets of numbers from other days, trying, trying to make sense of it. What am I seeing? What do they tell me? I look at her and I see bright thriving jubilant life that could and would flourish all the more if we could just escape the grip of this place. We have officially passed the mark of 365 days lived within this hospital, one year of her life spent within the confines of these walls. Twenty percent of her life has been lived constrained to Seattle Children’s Hospital. Sixty-five percent of her life has been spent fighting for her very life. I weary. Oh how I weary and yearn with panting desperation at times to just get away, get out, flee. But there is no escaping, there is no breaking over the walls in the night and running and running until you can’t anymore. The only way out is to be released.

Last week the doctors had a planning meeting. On that day, Allistaire’s BNP was a beautiful wee little 500 or so and her kidney function numbers, her BUN and creatinine were gorgeous, proclaiming happy kidneys profuse with blood. Most of last week was an ongoing struggle with her being nauseous, throwing up consistently once or twice a day. Sometimes she would just be nauseous in the morning and throw up once, having no issues the rest of the day. Some days she would eat well, getting in all her needed calories and fluid, just to throw up ten minutes after going to bed. I felt under tremendous pressure, knowing that nausea and lack of appetite can be signs of heart failure. Helping her get in the necessary calories and fluids is totally my realm of responsibility and I was desperate for her to demonstrate that she could do it. Yet each time she cried out in terror of impending throw up, clutching the little gray basin in front of her chest and out would come hours of effort, I felt such overwhelming defeat. Each time she threw up it meant we were behind on calories, behind on fluids and with far less time to get them in before the end of the day. The moment she finished throwing up I had to put milk or juice and food in front of her again, pushing, pushing her to consume.

There are so many layers of reasons she would struggle to eat. Three years of chemotherapy has created plenty of negative associations with eating. Incredible gut pain from typhlitus has made her on much higher alert in terms of stomach pain. Her entire system of stomach and intestines were at complete rest for nearly two months during which time she was on three types of hard-core broad spectrum antibiotics. Everything is slow and any pain, whether from gas, need to burp or nausea all gets mixed up in her mind and triggers her to throw up. Her gag reflex has intensified dramatically. It has all led to an all day long effort to get in food and drink with repeated defeats. I don’t know if there is anything more core for a mother than the need to feed her child. I feel it throughout my flesh and far beyond the workings of my mind, this desperate need to provide her nourishment and all the while fear of how it will be interpreted by the doctors. Thankfully, both the PICU attending and our ICU Continuity Care doctor, affirmed that Allistaire has many reasons to struggle with eating and that they were not overly concerned about it being directly tied to her heart function, given how encouraging she looked clinically and with all her labs. I finally felt some relief, having been given permission by the doctors to let down my guard a little.

I was encouraged to, “look at the trajectory.” By all other measures she was doing great. Her BNP was bouncing around in the four to five hundreds and all her other labs were good, especially once they transitioned her from IV Lasix to PO (“Per Os” in latin which means “by mouth”). The thing is though, a slight bump of the numbers in the wrong direction sets you on high alert, the ringing fear rising. Yeah it’s a little blip but it could be the beginning of a frightful trend. And so it has been, her BNP slowly rising from that beautiful low, each day a little higher and today 861. Her BUN too slowly rising from a happy 21 to 31 today. But the mind bending thing is, she just looks so great. She looks great! She’s happy, she is playful and less nauseous, rarely throwing up now. Her average heart rate has gone up but at least some of this is due to the fact that she is far more active these days. Ashlei, our social worker, saw her Friday after a week and a half gone, and exclaimed that she just looks so good, far more her normal self. It’s true, her cheeks are pink and she has a delightfulness to her being. It is a hard contrast to these numbers trending in the wrong direction.

Are we about to be dragged down again under those dark suffocating waves? Was this just some fantastic lull, a beautiful blip? May it not be. Her echocardiogram is scheduled for tomorrow morning. I know to expect her BNP to be high tomorrow as it has been each time she gets a red blood transfusion, which she got this morning. We’ll see what her BUN and creatinine are. I feel terror, terror. What will I know tomorrow night? How will the world tilt and spin in these next 24 hours? I don’t know what to wear. It sounds absolutely absurd, but it’s supposed to be sunny and 66 degrees but some how in some stupid way I feel distressed to wear cheery clothes that may be paired with weary tear strewn face. I thought we might order Pagliacci’s for dinner tomorrow. It’s always fitting, whether in sorrow or rejoicing, but which will it be tomorrow?

For so long I have been tossed this way and that, flesh shuddering against stone walls, the force bruising already bruised body again and again. I am battered, tender and any new hit hurts deep and hurts sharp. Like Allistaire’s chemo weary heart, so deeply wounded from relentless assault, so is my heart, my being thrown against the rocks so many times. Am I overly dramatic? Perhaps. Am I asking for pity? No. But I find the tears so close to the surface on so many days. It feels easier to quarantine my life to that of the hospital world rather than having to confront the extravagance of other’s ordinary life, a life for which I am ravenous. I had allowed my mind to wander with hope for escape. I told Allistaire there were daffodils and tulips blooming outside. I have yearned with a keen intensity for her to be outside. I am desperate to see her out on a playground with shoes on, not slippers. The hoped for plan was that Allistaire would be off of Milrinone completely sometime this week. She has weaned down .1 every three days or so and is now, as of Friday afternoon, at .1. All she had to do was finish these last few steps, spend 24 hours in the PICU with no Milrinone and then transition upstairs to the cancer unit for a week for monitoring and getting her at the right dose on a few meds. Then, then we would be free. We would be released like birds too long in a small cage. I could taste the beautiful sweet hope and see its translucent yellow ethereal light.

Like some triggered trap snapped closed, these numbers have shut out such lovely hopes. Perhaps I should not have hoped. Perhaps I should have kept those black blinders on my eyes, a beast of burden commanded to look only at the path immediately before you, be not distracted, keep your view small. I have not figured out how to make this hurt less. The only solution seems to be to be less tied to her, to loosen my grip and gain some distance, watching as if a movie, a story of some other life. But I can not. I can not. I can not want less to see her live. And even as I feel such ripping soaring hope for her to live, I fear too what sort of life she might have before her. I want her to live that she might be ravaged all over again by transplant. Who might she be on the other side of that? I see the ravages other children have endured to keep their life, ravages that keep devouring more. But wouldn’t I want a broken Allistaire rather than no Allistaire? I would take her broken in a heart beat over having her no more. But is this just my selfish wish, for my own good? I look at her bright, cheerful face, her endless pleas to play hide-and-seek, her wiggly joy and I think, no, it is not just my wish. How could I walk away from this bright spark? How could I let up for one moment attempting to keep that flame fueled with life?

I am lulled by the cycle repeated over and over and yet shocked that it is once again Sunday afternoon and I am preparing for another week in the hospital. Today marks her 80th inpatient day of this stay. For seventy-two days, she has been confined to the PICU. And here we are, on the cusp of another week and another echo. The snow falls, flake by flake, finally amassing to something visible only when millions have fallen, though each flake so beautifully unique, intricate, designed. The season passes and returns again. The snow falls and is eventually blanketed by another layer, and another. On and on it goes, year after year, individual snowflakes bound one to another and pressed down, compressing under the weight above of snowflakes past and snowfall present. With imperceptible motion, gravity pulls at the enormity of the glacier, drawing it down, gouging sheer rock from its place of such seeming eternity. And one day you stand in that magnificent space, that airy immensity of openness where once there was rock and now there the indescribable joy and feeling of exhilaration, of peace silently emanating from an emptiness between ridges of mountain, bright blue lake before you and green sweeps of valley rising all around, blankets of wild flowers, tender and tenacious.

What is the Lord up to? I cannot tell you. I stand in the storm, snow falling all around, each individual flake unique and perfectly designed and joining the masses to become indistinguishable. I may never see with these earthly eyes, that breathtaking mountain valley, blue lake reflecting blue sky. The Lord’s ways are not my ways. His story, His creation spans eternity and I and this story of Allistaire are but a breath, but a passing vapor, not insignificant but designed, intricate, unique. I don’t know what to pray, my heart too weary to muster words, but I fall at His feet. I am so very weak Lord, so bruised and tender, tired, so tired. Why so downcast Oh my soul? Why so downcast? Put your hope in God, put your hope in God. He is my only hope. He is my anchor in this storm, this thrashing back and forth, this constant buffeting of wind, I am tied to Him, in Him.

Mar11

Glimmer

Posted on March 11, 2015 by Conglomeration of Joy

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Delayed 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.

Feb22

Wait and See

Posted on February 22, 2015 by Conglomeration of Joy

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Strange how you can have expectations, just ideas you’ve grabbed from where? Thresholds and time frames constructed of air, of nothingness, no structure to sustain them and yet, they hold power, they help you to endure or enforce the heavy feeling of defeat. Somehow in my mind, when Allistaire first moved to the ICU, I thought, oh, we’ll be here for several days, maybe a week. Upon what basis did I come up with those numbers? Out of thin vacant air. Today marks her 37th day in the PICU. Today we begin our 6th week. I remember a friend telling me they were in the PICU for two months. “How in the world do you do that, survive that?” I wondered.

But here we are, now with no end in sight. Last Tuesday, 2/17, we were scheduled to be transferred to the BMT (Bone Marrow Transplant) team. We were supposed to be at Ron Don with a few weeks of testing to complete before conditioning for transplant was to begin. It stings to move past those dates, knowing transplant, well, who knows if and when transplant will come. In my mind I had counted it out and we were going to be home by the end of June and then we lost July with the idea of pushing back transplant another month to give her heart time to heal. The reality is sinking into me that she may never get to transplant, or at the best, it could be far off. A summer gone. The doctors tell me we must be patient, and wait and see, that it is often best to be patient. Patience, yes, I know something of patience. But while I’m seeking to be patient, leukemia cells will divide and multiply totally irrespective of our best laid plans. While I’m here with Allistaire cloistered away in the hospital, Solveig’s life goes on and I will have missed nearly an entire year her schooling, this added on to the many other months of her life from which I have been absent. To sum it up, I just feel sad these days, a deep pool of sadness ever below.

After 48 hours of being off of Milrinone early last week, the cardiologists decided to put her back on it. Her heart rate and respirations trended up slightly and there was the issue of nausea to consider. They hoped the Milrinone would allow them to titrate up her Carvedilol and deal with these symptoms. While her heart rate and respiration have dropped slightly, her BNP which was 4800 last Monday, trended down only as low as 3400 and is 4600 as of today. I feel disheartened. Yesterday they decided to put her on Digoxin, another heart med. Digoxin is an older med that like Milrinone, can help with symptoms of heart failure but does not necessarily help the heart to heal. The idea is that by carefully monitoring the blood levels of Digoxin and adjusting the dose as necessary (Digoxin can be toxic at higher levels), they can address her symptoms of heart failure in the scenario of a future weaning of Milrinone. They will continue to have to monitor closely her potassium levels as a number of her meds can impact potassium levels. Adverse effects and toxicity of Digoxin are more common when potassium levels are low, “since digoxin normally competes with K+ ions for the same binding site on the Na+/K+ ATPase Pump.” Her Lasix draws off potassium which they replace in her TPN (IV nutrition). On the other hand, she also takes Spironolactone which, “often increases serum potassium levels.” It is amazing the delicate balance of electrolytes that allow our body to function properly and thus the need for careful monitoring by the doctors. Blood pressure must also be monitored closely given that a number of these heart meds reduce blood pressure. Yesterday, they held her Enalapril for one dose and then decided to gone back down a little on her Carvedilol given her blood pressures over night were a little low. Too low of a blood pressure will prevent her from being able to take the heart meds she so desperately needs.

Tomorrow she will get another echo. I don’t feel very optimistic. The BNP hasn’t gone down really. We’ll see. She did not get her BMA (Bone Marrow Aspirate) done last week for two reasons. It was originally planned for Tuesday solely based on protocol. If there are no blood counts by Day +35 of the round of chemo, they go in and take a sample of the bone marrow to see what’s going on. As it happened, her ANC (absolute neutrophil count) finally started coming up last Sunday so the BMA was automatically pushed back until her ANC reached 200 which is the standard time frame with the idea that at that point there are enough cells to look at to make a determination of how her body and cancer is recovering. However, while her ANC has reached 200, they are still choosing to hold off on both the BMA and the PET/CT because both require sedation. At this point, her severe heart failure makes anesthesia more risky. Any sedation would be done in the OR (versus the room or clinic procedure room) and require a special cardiac anesthesia team. Because it is not necessary that her BMA or PET/CT take place right now, they will hold off until her heart recovers more or it becomes imperative to see what her leukemia is doing.

Coinciding with the rise of Allistaire’s ANC, she has had increased pain in her belly. Once her ANC hit 200, the doctors decided to stop the three antibiotics she’s been on for the past five weeks. I was a little hesitant to do so without a CT to be sure that her typhlitus hadn’t worsened. So Friday afternoon she had the task of drinking four ounces of apple juice mixed with contrast. After nearly 45 minutes of effort she threw up about half of what she had slowly sipped down. The nurse re-loaded her cup and she finally got in the minimally required amount. The results of the CT were mixed. “There is minimal residual wall thickening involving the sigmoid colon. The rectal wall thickening has nearly completely resolved. New from prior, the cecum is decompressed and there are areas of mild cecal wall thickening. There is a slight interval increase in degree of surrounding fat stranding. The remaining gastrointestinal tract shows normal course and caliber without evidence of obstruction or focal inflammatory changes.” So overall, she continues to heal and now that her marrow is producing cells, hopefully, the healing will soon be complete. But because there is some additional locations that indicate typhlitus, they are putting her back on one of her antibiotics, Meropenem, for now. Not surprisingly, but sadly, her lungs and liver show evidence of her heart failure, “Interval increase in size of small right pleural effusion with bibasilar subsegmental atelectasis and likely superimposed mild interstitial pulmonary edema. These findings, in conjunction with apparent vascular congestion of the liver may be related to a degree of heart failure.”

The thought that Allistaire’s heart must improve sufficiently to hit that benchmark of an Ejection Fraction of 45 within two months has felt so daunting. I was relieved to run into Dr. Gardner in Starbucks one morning and hear that she has been brain storming Allistaire’s situation. My face immediately lights up when she says things like that – I love and am honored that she constantly holds Allistaire in her thoughts even when she is not physically near. I love that she too is so passionate about finding a way through for her. We are both assuming her marrow remains in remission. So she proposes we put her on Azacitadine given that it worked before. (Allistaire did 7 month-long rounds of Azacitadine when disease was found post transplant and it put her back into remission and kept her there.) I wondered about possibly using Decitabine since it’s a little more hard-core than Aza. We do still have her chloromas (solid leukemia) to consider. She said she would consult the other AML docs. She also mentioned Clofarabine as an option. The conditioning chemo for Allistaire’s last transplant was Clofarabine combined with Busulfan. Busulfan is definitely not an option but Clofarabine could be combined with Cytarabine. All three of these chemo options are easy on the heart and have shown in the past to be effective against Allistaire’s cancer. Wahoo!!! I love options! After Allistaire’s first round of chemo from this relapse, which put her into remission, I really did not think we would be in the position of being desperate for transplant. But it seems that we are here again, desperate for transplant, a terror that may just bring her healing.

I called our financial counselor here at the hospital to see what Allistaire’s bill is. I couldn’t help myself, knowing all that has transpired over this last month. I told someone the other day I thought Allistaire was on at least 15 meds, so I asked the nurse to print me off her med sheet: twenty-five different meds each day, most of which are given 2-3 times per day. Since she was admitted on January 9th for this round of chemo and the following PICU stay, her bill is $1.1 million dollars. Her room alone is $12,700 per night and each GCSF shot costs $1,040 which she got each day for 33 days. This puts her total bill since diagnosis well over 5 million dollars. Isn’t that staggering?! Isn’t it crazy that one round of chemo with ONE infection has cost $1.1 million?! What if that money could be put toward cancer research? What if we could invest millions of dollars upfront to find better, more effective ways of curing cancer? What if we didn’t have to poison the body, destroying the heart and suppressing the marrow so far that the body is left without defense from even the most common attacks? We cannot take the money that has been invested in sustaining Allistaire’s life, nor the money that will continue to be spent and give it instead to cancer research. Such an exchange is not possible. But the need for money put up front toward cancer research is so clearly desperately necessary!

Many, many of you have asked me how you can help. You have felt powerless to do anything to help Allistaire. Giving to cancer research may not feel like directly helping Allistaire but it is! First, it is a tangible way that you can show your love and support for Allistaire and our family on this journey. It is tangible. I see your name when you give and I feel blessed that you would stand by my side in this fight, that you would cry out in anguish for more! Will you stand beside me? Will you give? And you know what? We don’t know how long Allistaire has, but she has lived long enough since her diagnosis to not only be witness to, but be directly effected by new developments in cancer research! Cancer research in the last two years is literally what has provided this combination of chemos that has put stamped down HER cancer and put HER into remission! This is not some ambiguous, indirect, vague blessing. Cancer research is precisely what provided her last transplant which has given her life the past two years. You say you want to help. Your heart is heavy with grief for us. You wring your hands wondering what you can possibly do. GIVE! Support cancer research at Fred Hutchinson Cancer Research Center! It’s not hard, it’s not complicated. Give. Please.

Click HERE to support me in this year’s Obliteride where I will once again have the joy, the sorrow and the honor to tangibly fight this foe that seeks to tear away the life of Allistaire and many others, so beloved.

Feb18

Weeping

Posted on February 18, 2015 by Conglomeration of Joy

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Every day I think, maybe today will be better, maybe today things will turn around, but every day I feel my face slammed hard up against the wall, the hot breath of terror hissed into my ear, knife against my throat. I feel I can’t breathe. I hold back tears more times than I can count. I’ve felt frantic, in shock. She’s always overcome, there’s always been a way through, but maybe, maybe, maybe this really is that closed door we have so long feared, dreaded.

Her BNP today is 4300. I don’t know why. “Heart Failure,” is all I hear now. It supersedes everything else. Her echo was terribly bad on Monday. Her ejection fraction dropped yet further to 18 (down from 29 last week) and her shortening fraction is somewhere around 9 – I never heard exactly, just a number the cardiologist thought she remembered but I never tracked down because those numbers are just like ragged rusty nails dragged hard against my skin. They tear and burn and with all my flesh I despise them! I hate them with violence and I want to tear them to shreds. I want to explode with rage against them and somehow by force of will destroy their reality, tell them NO! You CANNOT be. You are not allowed here. You are forbid to bind yourselves to my child!

I’ve been trying to get her to eat. Ten bites of chicken noodle soup was the goal for the first half of the day. Three bites of apple sauce. So when she threw it all up, it stung with utter defeat and the words of the cardiologists berating my heart, “Nausea and lack of appetite can be a sign of heart failure.” I strain to find some other cause, some other plausible explanation. And there are – her ANC (Absolute Neutrophil Count) started to finally come up on Sunday after 30 days at zero. Sunday it was 30, then 93, 75 and today 172. Her belly pain has increased substantially with pretty consistent pain throughout the day. My thought is that the pain is related to the increase in white blood cells which go immediately to where healing needs to take place – in her gut. This causes the pain and “worse before better,” just like the infusions of granulocytes did. There is a lot of evidence too that she is having substantial pain related to anticipating pain. This ICU stay has terrified Allistaire like nothing I have ever seen. It breaks my heart that even the nurse just coming to scan her ID bracelet causes her to cower in fear. She has experienced so much physical pain and she feels she can trust no one not to hurt her. Oh it hurts my heart, it hurts, it hurts. So now she is also afraid to eat, afraid of the pain in her tummy and just approaching her with food on a fork causes her to cry out in pain.

I have long sought to yield Allistaire to the Lord, to lay her down at His feet. By God’s grace and His Spirit at work in me, I have bent my knee time after time, knowing that He is God, He decides and it is not because He needs some sacrifice from me. While it must seem mad to some, perhaps to many, I really believe that God will bring good, incomprehensible good of unfathomable proportions from these losses. But oh, how it hurts so bad. Suffering and loss are not some abstract yielding. It hurts down to my fingertips, they ache with blood saturated with pain. My flesh throbs with the deep, deep sadness of loss present and anticipated. In walking with God I don’t just get to say yes, I submit to your authority and sovereignty as God and get to skip over these woes. I walk, I walk, intimately aware of every detail.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. The day before I found myself frantic because all that is in me yearns with brute force to be able to turn this tide. I see our doctor walking down the hall before me, whistling. For him, he knows we are doing all we can and in that satisfaction he can rest. But I walk down that same hall behind him feeling my heart exploding and leaking away from me, legs quivering with sorrow soaked weakness and no matter how well we do all that can be done, it will never be enough. It is not satisfying to me. I want Allistaire to live! It is hard for anything less to ever feel like enough. I went home to Montana this past weekend and it was good. It seemed strange that such a place is real – such an extravagant beauty and gift is that place and is ordinary life. Oh how I long with desperation for ordinary life. A little blue bucket with yellow handle hung from the bush by the driveway, now visible because of winter’s taking away of leaves. It just hangs there, piercing my heart right through with memories of this summer when Allistaire and Solveig would play in that crowded hedge of bushes, their little domain, their fort. I cannot get that blue bucket out of my vision. We went about town, just the three of us and it was good but still it took so much not to just cry and cry and long for a time when this might all be behind us and there are four, four, four as it should be. I think back over last summer when we really thought this might all be okay, maybe she had escaped and maybe we could really live. Those memories precious, feel like distant, far off lands you wonder if they are truly real.

Yesterday morning I sought to be still before the Lord and wait patiently for Him. I rose early to exercise, shower and eat breakfast. As I neared the Starbucks line, I caught sight of a little girl I know and her mom and dad. They now live in House B of Ronald McDonald House, in the very same apartment Allistaire and I lived in after her transplant. They have been given a room there because this sweet girl is now on Hospice. Only a month ago I saw her running around Ron Don, bald head and feeding tube, but joy and life abundant. I saw them a few weeks ago, with shoulders slumped and flat faces and the news that there is nothing left for her. Nothing left. They must give into that beast. And I saw her face yesterday, distorted by her tumors now everywhere in her body, her eye bulging but shut closed, flesh strained and contorted purple from the pressure beneath. I looked upon cancer and its devastation as I went to get breakfast. My heart tattered for them and fumbling for words and perhaps silence that loves. I felt I was looking at my future.

I’ve always known it could come to this. But as this darkness closes in and the light seems so dim, oh how I long to turn away, to flee, to scream so loud and unending that I can no longer hear these words of doom. I weary of numbers that slice. The thing is, I know the Lord will be with me. I know that He will hold me up as He does today. It seems too awful to endure and if so, that means I won’t have to endure it will I? No, I very well may have to walk, one tedious excruciating step after another, but I know I will endure. But why, why must this be? What is the point?

A friend of mine whose son died recently fears that her son’s death was punishment from God. How I long to offer her words of life that would take away this overwhelming burden. I went to the passage where Jesus sees a blind beggar and His disciples ask Him why this man was born blind, was it he or his parents that sinned. Jesus responds in John 9, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.” This man was desperately poor and blind from birth for the direct purpose that God’s work might be displayed in his life. What sort of exchange is this? Why this wretched suffering so God can get glory? Does He really need more glory? My gut response to the idea that God would cause/allow suffering for His glory is that He is an arrogant asshole. But this is not the end point, His glory is not His aim. His work in our brokenness manifest His glory for the direct aim that we might see Him for who He really is – that His glory would reveal His true self as our only salvation, our only hope, our only source of life. He seeks glory that we might know His love, for that is His ultimate glory, His great love. He loves us and He wants us to have life and He will exact whatever it costs to give us eyes to see how desperate we are for the life He offers. He loves us and He is ever extending His hand and inviting, inviting us in, in to dwell with Him and to be satisfied.

Why must Allistaire suffer? Why must I? In my finite view with my finite heart I can only guess and grab at a handful of small reasons. But what if it is for my friend? What if in my brokenness she can see the hand of God extended? What if He makes His glory known in my life for the express aim of drawing people to the only source of life, which in itself is ultimate mystery, ultimate suffering, ultimate life. It is the bled out heart of God through the sacrifice, the death of His Son Jesus Christ that life in Him is made possible. Who am I to liken myself to Christ? What is my life? It is but a breath, a vapor, but it is my great, immeasurably dear gift to Him. Shall I suffer? How shall I live out each of these days that seem to cut and gouge relentlessly? I walk, nay, I am carried by Him. I now rejoice in the dependence in Him I once reviled. I know not the days ahead, I even dread the hours that will bring by the cardiologists. I don’t know how to let go of this fight. I don’t think I shall until there is nothing left, nothing left.

Most High God who has come down so low, compassionate, merciful, gracious High Priest who is acquainted with all my sorrow, carry me. Make your works displayed in our small lives, for your glory, so that we may all swoon at the beauty of your love that causes us to fall at your feet and be held in you. Spirit of God, help me to be still and wait patiently for you.

Here is a link to sermon by John Piper about the blind man.

Feb12

Stagger, Tremble

Posted on February 12, 2015 by Conglomeration of Joy

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We 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.

Feb3

Numbers

Posted on February 3, 2015 by Conglomeration of Joy

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This 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.

Jan18

PICU Day 2

Posted on January 18, 2015 by Conglomeration of Joy

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Allistaire 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.

Jan18

ICU

Posted on January 18, 2015 by Conglomeration of Joy

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As 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!