(No, neither The Curmudgeon nor The Curmudgeon’s Attic is dead.  I’ve just been busy with other stuff, like getting my son moved down to Auburn.  I wrote the following post as the final one for the blog we have kept for folks that were following my son’s leukemia treatment.  I removed the names to protect the innocent [and in some instances, guilty], and am reposting it here for those who are interested.  If for some macabre reason you want to see what a bone marrow transplant looks like in real time from the perspective of a patient’s primary caregivers, go here.  Start at the beginning, about three years ago, and you ought to get a pretty good idea, by the time you reach the last post [excerpted here], about the good, the bad and the ugly so far as life in the trenches of a war against leukemia goes.)

Now, the final post for the leukemia blog:

As church let out after the youth choir’s homecoming concert a couple of weeks ago (Sunday night, July 22, 2012), a performance in which my son sang the solo for a foot-stomping, crowd-pleasing, Southern gospel song, “I’ve got my foot on the rock”, his sixth-grade Sunday school teacher mentioned to me that he looked good, like he was back to “a hundred percent”.  And so he is, as close to 100% as anyone who’s endured two bone marrow transplants could ever hope to be. 

His latest labs, pulled July 25th at the pediatrician, showed his white count at 5.9, his red count at a whopping 14.9 (HCT at 48.4), his platelet level at 290k, his liver functions normal and his kidneys operating at a creatinine level of 2.5, with BUN at 38.  Except for the kidney functions, which are as good as they’ve been since recovering from failure in early 2010, everything is in the normal range.

The GVHD is gone.  It disappeared after a pretty severe infection last April, which his pediatrician diagnosed as walking pneumonia.  Apparently the new bone marrow needed to be prodded by a raging infection to realize there were fewer differences between itself and the rest of his body than there were between itself and whatever pathogen had infected him.  When we visited the pediatrician in April, the boy’s white count was 20,000—higher than it had been at the time of the relapse diagnosis (normal is between about 4,000 and 14,000).  The pediatrician was great about it, saying simply things were “really cooking” in there.  He had the perfect demeanor, not trying to exalt himself by pretentiously warning us of the dire possibilities such a high count might imply (as if we didn’t already know), just explaining the white count as a normal reaction to infection.  Which is exactly what it turned out to be, but better. 

We (my wife and I) were, of course, a bit on pins and needles, and without any help of the idle speculations we’d so come to loath from the transplant team, or were until we got the follow-up labs a few days later, which showed a more normal number of about 6,900 (“6.9” in the manner it’s normally transcribed).  We pretty much understand that our son’s body will always be at the crossroads, capable of veering either way, towards continued life or imminent death at any moment, and can get along just fine without self-serving reminders of the fact.  I’m sure had we been at the transplant clinic when we got the labs showing 20,000 white cells, dour faces would have warned us of a relapse, though there is nothing new that the transplant team could do about a relapse, so their idle speculations would have been less than useless.  The trick for our son from here on in is to live without worrying about dying—to “die while he’s living, not live while he’s dead” as the line of a Jimmy Buffett song puts it, which is really how everyone should approach life.  Thankfully, he comes by it naturally.

As the infection built over the course of a couple of weeks, we had decided (without physician input—you learn after a time to just do what you know to be correct) to quit giving him the immune-suppressants that had been necessary for keeping GVHD (the autoimmune disorder unique to bone marrow transplants, where the new marrow attacks the body as non-self) at bay, in order that he might be better able to fight off whatever it was that had attacked him.  When he recovered from the infection after a round of antibiotics, we decided not to put him back on the immunity-impairing drugs, just to see what might happen.  And nothing did, which is exactly as we’d hoped.  The liver functions remained normal (the GVHD first presented as impaired liver functioning), and even his kidneys improved to about the level they were before the GVHD.  They’re still only performing to about a third of what could be expected of completely healthy kidneys, but God graciously gave mankind a good bit more kidney capacity than is necessary to sustain life. 

If the GVHD remains quiescent, he might just get to keep these kidneys for a good little while.  At least in his case, and contrary to the repeated assertions of the transplant doctors, GVHD detrimentally impacted his kidneys, which makes perfect sense. GVHD, which can take many forms, presented in my son as something very similar to lupus, a not uncommon autoimmune disorder in ordinary folks who have never had a bone marrow transplant.  The Reynaud’s syndrome that caused his finger tips to turn blue and die starting in late 2010 is a classic symptom of lupus.  And lupus detrimentally impacts the kidneys.  People that battle lupus of moderate or worse severity for a long enough duration quite frequently suffer kidney failure, and that’s without having endured two bone marrow transplants, which are especially hard on kidneys, among the other of the body’s organ systems, as we know all too well.

We quit the bone marrow transplant unit along about March, just we were preparing to get the re-immunizations underway (which have now been completed by the pediatrician).  I had been intermittently asking the transplant doctor for about a year and a half for a referral to another kidney doctor.  My son’s kidneys presented the only long-term care issue of which we were aware (with the kidney prospects having dramatically improved since then), and we simply didn’t like the guy at the hospital to whom they’d referred us.  The transplant doctor kept hemming and hawing, so last February I finally took the initiative (once it appeared we had stabilized things with the GVHD so far as we could), and called our pediatrician, who gave us a referral to another nephrologist.   We visited the new nephrologist before our next BMT clinic visit in March, which the transplant folks apparently found out about because they didn’t pull a renal and liver panel on our return.  Ever since the transplant (and kidney failure), the bone marrow unit had never before failed to do a liver and renal panel when doing lab work.  The new nephrologist has whatever status a doctor in private practice has that allows them to send patients to a particular hospital (I think it’s called hospital privileges), in this case, the hospital where he received the transplant, so was able to pull my son’s lab history directly from their computer records, which is how I suspect the transplant unit found out about our visit, and is why, I suspect, they didn’t pull a liver and renal panel.    But whatever prompted the transplant unit’s omission, I figured it was finally time to ease our way off the transplant ward, so I called the pediatrician again, who was gracious enough to agree to take over his care.  There was little left for the transplant unit to anyway do except monitor the kidneys, and they hadn’t been concerned enough with that to order a renal panel.  March is the last time we’ve seen or talked to them. 

While I’m just speculating as to why the transplant unit failed to draw a liver and renal panel on our visit, the fact I would expect the worst (that is, the intent to punish our choice of nephrologists, instead of just carelessness, which is bad enough) is indicative of the depths to which our relationship with the transplant unit had sunk.   I had been skeptical of allowing the same transplant unit have another crack at a bone marrow transplant for my son (they had done his first one in 2001).  Though I let myself be talked into allowing them to do it again (mainly because almost everyone who had been there before had left in the intervening eight years, which I should have taken as a warning sign rather than a measure of comfort, since such high turnover is never indicative of organizational health, not even at McDonald’s), it didn’t take long until I found my skepticism was justified.  I walked into the room about 4:00 pm circa December 6th of 2009, a few weeks into the transplant, and it looked like something out of a bad slasher movie, with blood literally everywhere.  My son’s nose had been profusely bleeding—so much so that he was regularly vomiting copious amounts of blood he was swallowing as it drained down the back of his throat when it didn’t gush out his nose–for the last six or so hours, yet he hadn’t been infused platelets, even though his morning labs, taken about twelve hours earlier at 4:00 am, indicated he only had 8,000.  By about December 6th, his bone marrow was more or less completely incapable of producing platelets, which was entirely expected, and was the intended outcome of the chemotherapy.  A teenage boy goes through about 30,000-40,000 platelets a day.   Thus by 4:00 pm on December 6th, he had no platelets and no ability to produce them; was bleeding profusely, and the last set of labs, taken twelve hours earlier, had indicated then that he was below the minimum level (10,000) for which protocol demands infusion, whether there is bleeding or not.  This child who had already endured so much, who was floating on the sea of hope by only the slimmest of reeds, was being allowed to needlessly suffer.  And why?   I was told at the nurses’ desk it was because there weren’t any platelets.  The on-call doctor never bothered to come around and explain how it could be that a bone marrow transplant unit did not have access to platelets.   Whose desk, I wondered, had the transplant doctor stood upon to ensure his patients got platelets?  Apparently no one’s.  (Incidentally, this was a problem we never once experienced through two rotations in the hematology/oncology clinic).  Platelets finally arrived late that evening, but first they had to infuse red cells in order to replace all the blood he’d lost, which actually served to exacerbate the bleeding, as bags of red cells must have blood thinner added to them in order that they’ll flow more easily during infusion.  The bleeding didn’t finally abate until after ten that night.  I was livid.  And still am, every time I think about it.  Not surprisingly, the relationship went downhill from there.  If you can’t do the simple stuff, like making sure there’s a steady supply of platelets, and infusing them promptly when protocol demands, how could you be trusted with the difficult stuff? 

The episode reminded me of a passage in a book I had read after the first transplant as part of my quest to better understand what had just happened to my son.  The Cure of Childhood Leukemia: Into the age of Miracles (1995), is a well-written history (by John Laszlo, M.D., who was heavily involved in the research) of the incremental advances in treatments for leukemia that finally achieved the remarkable possibility of curing most kids (about 75%) of what had before been a nearly 100% fatal disease.   It wasn’t until the 1960’s that medicine had finally discovered platelets and their importance in stopping bleeding.   Emil J Freireich was one of the researchers at the National Cancer Institute who discovered how miraculously platelet infusions could keep leukemia patients from dying of hemorrhaging before their chemotherapy had been given a chance to work.  He immediately adopted a liberal platelet infusion policy for any child who was actively bleeding and whose platelet counts were low, depending for his supply of platelets on the family and friends of the child, who were always more than willing to donate.  Consider this passage from the book:

Gordon Zubrod [a fellow researcher and physician] came by on rounds one day and he said, ‘You know Freireich, I remember the first days we made rounds here and all the kids had blood on their pillows.  Now I don’t see any blood on their pillows’.  That made me [Freireich] feel good.  I had made a rule on the Leukemia Service that, if I ever spotted a patient bleeding, the fellow responsible would get axed.  There was not a single patient who didn’t respond to platelets. 

There was blood all over my son’s pillow (and sheets and body, etc.) that day and into the night, yet no one came and asked for a platelet donation, or even explained what the holdup in infusion was.  But, of course, no one got the axe.  The rather queer organizational structure of the bone marrow transplant unit at the hospital (it is technically a part of an adult hospital’s much larger bone marrow transplant unit that was calved away to the nearby children’s hospital in 2000) ensured there would be no Freireichs wielding axes when patients unnecessarily suffered.

Besides, the doctor knew he would only be attending to my son’s care for another week or so, after which time he would rotate off call for the next four or six weeks, as was the custom (to do what, I never quite figured out).  The days surrounding rotation were particularly frustrating, as the doctors rotating on service required at least two days to gain familiarity with my son’s particular situation, relying heavily on me or the wife to communicate what the previous doctor’s priorities were, who then usually devised his own set of priorities, just because, I suppose.  It seemed that the physician staff of the transplant unit hardly ever communicated with each other, and only rarely knew our son’s history, labs and otherwise, as well as we did, though everything should have always been fully annotated in his charts, or, so it would seem that would be the case.  We actually had one doctor ask, several months into the second transplant, if he had ever had brain cancer.  Really?  The doctor didn’t know, after eight years of treatment, that he had never had brain cancer?  The transplant unit had one hell of a system.  In fact, immersion in it often felt like I imagine hell must feel.

During the first transplant, it had been me and my wife, not the doctors, who had noticed a swollen lymph node on our son’s neck a couple of weeks after he was admitted for a fever, presumably caused by an infection, the source of which the doctors couldn’t figure out.  It was me who told the doctor that if he figured out what was wrong with that lymph node, he’d figure out what was wrong with our son.  The doctor wasn’t even aware that there was a swollen lymph node.  Prompt biopsy of the lymph node upon its “discovery” revealed his body being overrun by the Epstein-Barr virus, or EBV.  In transplant patients, EBV infections, which are the result of impaired immunities due to both the transplant and the coincidental immune-suppressing drugs, are known as post-transplant lymphoproliferative disorder (PTLD), and are exceedingly dangerous.  Three of five kids (nationwide) transplanted with stem cells from baby cord blood in the year in which our son had likewise been transplanted died when they had been stricken with the infection.  Had we not been paying close attention to our son’s condition, we’d likely have only discovered the source of the infection after an autopsy.   Thus was forged our sense that we were the most important component of the care-giving team, a lesson that other parents might do well to heed.  It would have been tantamount to parental malpractice for us to have put blind faith in the doctors of the transplant unit, a feeling that we carried forward into the second transplant, which was quickly amplified by our experiences.

There was another aspect, not quite as important, but equally as contentious, that soured our relationship with the transplant team.  There often seems to be something of a puritanical strain to the attitude of physicians who treat children, one which was particularly evident on the transplant ward.  Doctors who treat kids like to couple pain (take your medicine, etc.) with recovery from illness (and you’ll get better).  Since transplant doctors fancy that recovery from the illness besetting them is tantamount to saving the patient’s life, the level of pain they believe is acceptable to inflict is much higher.  But by the time of the second transplant, with a prognosis as dire as was our son’s, I was having none of it.  If he had only a few weeks or months to live, I would do everything within my power to ensure he lived them as pain-free as possible, including attempting to save him from big, unnecessary pains, like all day nosebleeds, but also from the little stuff, like waiting six hours in the surgery ward for a procedure that takes less than thirty seconds to complete (i.e., taking his line out).   These guys didn’t seem to get that time free of pain and procedures is a precious commodity for a patient who might be enjoying the last of it they had.  During the first transplant, their puritanical attitude seemed less oppressive, as I actually imagined at the time that a bone marrow transplant might “save” my son’s life (not quite understanding at the time, that doctors never “save” lives—they only occasionally extend the life of the body).  By the second transplant, I suffered no such delusion, and demanded that everything be done with an eye to inflicting as little pain and discomfort as possible.  Only those procedures absolutely necessary to the completion of a successful transplant were allowed (which is why I allowed almost no bone marrow aspirations after the transplant—what good could it do to know if he had relapsed, when there was no therapy for treating it?), and in the least invasive, least painful, least inconvenient, manner possible.  And when pain and suffering could have been eliminated through very simple expedients (platelets for the nosebleed, etc.), but wasn’t, it infuriated me. 

But I’m not sure that our, particularly my, relationship with the transplant team, didn’t itself become an impediment to my son receiving the best care possible.  The relationship became outright hostile after a particularly nasty confrontation involving the possible causes and treatments for a bleeding bladder episode (back in February/March of 2010), one in which I refused to allow the transplant doctor to have a catheter inserted until the urologist had gotten a chance to look at an ultrasound taken earlier; a refusal that ended up saving the young man some measure of pain, as the urologist said it would have actually impaired the passage of clots, and instead scheduled him for a cystoscopy the next day.  After the bladder thankfully quit bleeding, more or less on its own a few weeks later, it took eight months for the transplant team to diagnose GVHD, though by then he was showing practically all of the classic symptoms of the disease—elevated liver counts, difficulty in ingesting food, dry eyes, and of course, in his case, impaired kidney functioning.  After ignoring my repeated pleas that his symptoms could indicate nothing else but GVHD, Reynaud’s syndrome, where his fingertips turned blue and died, finally sealed the diagnosis, but I feel like the animosity in the relationship might have caused the diagnosis to be unduly delayed, ultimately causing unnecessary suffering.  In other words, my skepticism which developed into outright hostility with the bleeding bladder episode detrimentally impacted achieving my objective, which was, ever and always, to do the best I could to ensure my son received the care he needed to treat his condition, so far as it was treatable, with the least possible amount of pain and inconvenience along the way.   As his kidney and liver functions drifted south during the GVHD, I was almost to the point of leaving the transplant unit, and getting him some steroids and immune-suppressing drugs on my own.  Even my dad (a family practitioner), who mostly stayed mum on the various treatment dramas, later offered that he was about ready to just get the boy some steroids.  Thankfully, Reynaud’s showed up to clinch the diagnosis.  But even then, we were sent to a rheumatologist, who, while specializing in autoimmune disorders, does not specialize in autoimmune disorders arising from bone marrow transplants,  so initially went way overboard in his prescription for immunosuppressants, causing his marrow to crash, which ultimately required the infusion of his last two bags of packed red cells, in March of 2011.  But there may be a bright side to delaying treatment for GVHD for so long.  GVHD is known to prevent relapse—the new marrow tends to kill any lurking leukemic cells which carry the host’s DNA.  So, maybe by taking so long to treat it, the GVHD had time to kill any remaining leukemia. 

But I don’t mean to criticize other aspects of the care my son received through the years.  The nursing care, particularly on the transplant ward, particularly among the night nurses (as I can personally attest, since I did the vast bulk of the night shifts during both transplants), was exemplary.   I’ll never forget how quietly one particular nurse would glide into the room, doing her best to allow everyone as much sleep as possible, only gently nudging me awake early one Christmas morning to let me know we wouldn’t be going downstairs to the ICU.  So far as I’m concerned, those night nurses, and that one in particular, are building for themselves a great store of wealth in heaven.  They really are angels.

My son’s primary hematologist/oncologist was simply the very best anyone could hope to have had over the eight long years from initial diagnosis till release to the transplant unit for the second transplant.  His urologist was similarly excellent.  For both men, whatever is being paid them is too little, yet also too much.  The motivation others have for money or acclaim can’t explain why these guys work as hard and as brilliantly as they do.  If I’ve ever met doctors who approached in my mind the status of demigod, the way it seems so many doctors would like to think of themselves, it would be these guys, and mainly because each behave like the mere mortals that they are, humbled by the immense complexity of the human body, yet bold and courageous enough to dedicate their lives to try to understand and treat it in ways that hold clinical relevance for their patients.  They slog through every problem, no matter how small, following up relentlessly to ensure it is ultimately resolved so far as is possible.  I remember well the hematologist/oncologist taking the time with me to explain in detail how to make sure I was administering the right dosage of a shot prescribed for the blood clot that led to the relapse diagnosis.  My eyes were getting old, and I couldn’t quite tell what I was reading on the syringe and how to interpret it, but the good doctor, though busy as he always is, thought nothing of helping me through it, clarifying the dosage scale on the syringe so that I could follow through on the frequent dosage adjustments necessary to achieving the desired level in the body.  And I remember the urologist personally coming by every morning at six to check on my son’s catheter and bag during the bladder bleeding episode, physically adjusting the catheter and the level of its flow and instructing me in the procedure—a task most doctors would have left to the nurses.  These guys, and the hospital’s nursing staff, particularly on the transplant ward, exemplify all that is good about the medical profession generally, and the hospital where he was treated, specifically.  And as with most things exemplary, it was the basics—the blocking and tackling, to use a football metaphor–that made the difference.

We’ve been in the process of moving our son’s stuff down to Auburn this week, getting him ready for classes that start August 15th.  It all seems a bit anti-climactic.  Eighteen years of hell for him and sacrifices for us, just for him to do what practically everyone else is doing?  It seems like there should be something bigger and more important in store for him than just wasting time at what amounts to an extended overnight summer camp that generally offers little if anything useful in the way of training, and next to nothing in the way of education (which is not to single out Auburn for criticism—I’d say the same about Alabama or pretty much anywhere else).  He hasn’t a clue as to what he’s aiming to accomplish down there.  I tried to talk him into taking a gap year, so he could figure out what he might be interested in, or just so he could adjust to life outside of the suffocating provincialism of high school, but he would not be persuaded.  I had earlier tried to talk him into giving up on keeping up with his studies during the transplant, and to just restart school as a sophomore once the transplant was through.  He didn’t listen then either, but did acknowledge, as graduation approached, that taking off to restart as a sophomore might have been a good idea.  Time will tell whether he’ll feel the same about going to Auburn straight out of the gate.  I figure he’s going mostly because so many of his friends are heading there.  He’s living off-campus in a condominium with two of his buddies from high school that’s at least as nice as the nicest apartment I ever had when I was single, and has a bedroom bigger than his one at home, along with his own bathroom that he doesn’t have to share with his sister.  I guess he gets a pass at paying existential dues, as he surely has paid them through all the pain and suffering he’s endured in his short life, but really, I doubt things would be the least bit different had he not suffered the relapse, such is the culture’s misplaced belief in the value of a college “education”.  But living off campus with a budget, even if a somewhat luxurious one to which he is not expected to contribute at all, might allow him to learn something useful while he’s there (how to balance a checkbook?), aside from just how to appropriately greet other of the Auburn faithful with “War Eagle, y’all” like they taught him at CWE (Camp War Eagle). 

To get him to this point (though I’m still trying to figure out what the point to this particular point is), there were a great many family and friends, and sometimes even strangers, who helped along the way. 

The family (i.e., his primary support group—me, the wife and his sister) couldn’t have survived the extended hospitalizations the transplant entailed without the wife’s mom and step-father.  Their contributions were indispensable, from ensuring his sister got home every day from school while he was hospitalized, to pulling a swing shift from the afternoon through the dinner hour at the hospital so that we could revivify and re-commit over a quiet dinner at home.   

The wife’s friends from work, college and the neighborhood stood by her always, sometimes helping with meals or child care, sometimes just providing support for her to lean on.  When things would get really tough, it’d be hard for her to lean much on me.  It was all I could handle to deal with our son’s medical issues and coordinating care priorities with her and the doctors.  I didn’t have much left for providing emotional support.     

My son’s friends from school and church, some of whom were around for the first transplant, were loyal and good, continuously helping brighten his days and lift his spirits with their presence and support. 

I sorta had friends, too.  The ones of my “buds” who didn’t come in a bottle or a can were known as Augustine, Spinoza, Job, Psalms, Ecclesiastes, Socrates, Christ, Mayer, Williams, etc.  I drew inspiration from philosophers and poets ancient and near, pious and profane, in ways I never imagined my feeble mind was able.  They helped me find God everywhere and in everything, even in the incessantly bleeding bladder; even in the fact of the relapse. 

The hospital’s chaplain became my son’s friend and confidante over the course of his care, often times stepping in to bridge the gap, spiritually and otherwise, between what a teenage boy needed from his father and what he got from me, which was a pretty deep chasm to span. 

The parents of one of our daughter’s friends, swooped in at just the right moment to take her with them to Chicago for the first part of Christmas break, so that we were able to concentrate on his care when things were getting really quite dire, proving that they were the answer to the question in a Jack Johnson song, “Where have all the good people gone?”  Like my son later said, “It appears that at least a few of them are [or were then] in North Shelby County.”

The church was tremendous throughout.  The youth minister at the time made sure our son was never far from the minds of the kids in the youth group, leading them in decorating a Christmas tree for his room, and even bringing the DNow band up for a visit, among a host of other things.  The church’s grammar school directors showed up the evening of Christmas Eve, during the darkest hours, when we thought the move down to the ICU was imminent.  Then the head pastor of the several thousand member church showed up on the evening of Christmas Day at the hospital.  It all was very humbling, to say the least. 

My wife’s dad, an old truck driver who recently passed away, showed up at just the right moment, a few days before Christmas, when the kid’s kidneys had already failed and it looked like his liver was on the way out, and I was getting a wee bit despondent over it all.  I doubt he really figured before he arrived that he’d be spending the nights of his Christmas visit at the hospital with me, but that’s how it went down—I needed him there—and he took it all in stride.  I don’t know what I’d have done without his good common sense and wisdom to lean on.  My mom, who also passed away recently, brought lunch to the hospital about once a week, and afterwards would sit with her grandson for the afternoon so I could have some time off.

And I can’t fail to mention all the folks up on the Mountain, from where my wife’s mom hails.  There are too many to mention everyone by name, but I particularly remember my wife’s aunt helping get my mind on things other than my son–important things, like my birthday and Alabama football.  I’ll never forget her calling to wish me happy birthday just as the kid’s kidneys were failing and really, all hell was breaking loose.  She asked me did I think Alabama would win its upcoming BCS championship game (the 2009 season).  “Of course” I told her.  Then she asked me if my son would be alright.  “Of course” I again told her.  Of course, I had no better idea on either matter than did she.  But pretending like I knew seemed to make the two of us feel better on both counts, and it was cost free.  If I was wrong on either score, we could deal with it when we got there. 

The high school played its role.  The kids there participated in a blood drive that netted over a hundred units of blood.  The school system staff made sure the school accommodated my son’s studies so that he could keep up with his class, which he somehow managed to do (against my advice, previously noted), and graduated along with them this past May, a feat he could not have accomplished without the help of his homebound teacher, which was made all the nicer because we knew her from church.

For personal and professional reasons, I was my son’s primary caregiver through all this.  The wife’s job had the insurance and it was my turn to take the lead caregiver role in this transplant, as she’d done it the first time.  And bone marrow transplant patients require full-time nursing care, for at least about the first six months, and in my son’s case during the second one, a good bit longer.  Of a great many tasks for which I am ill-suited to perform, nursing has got to rank among those for which I am the least capable and qualified, and I know it often showed. I don’t like being around sick people.  I don’t even like being around myself when I’m sick.  I am better suited for butt-chewing than butt-wiping.  Considering how raising my son has turned out for me, God has either a good sense of humor or a keen sense of irony.  Thankfully, God can’t throw any more transplants our way.  This last one was it. The boy’s done with leukemia treatments, and I’m done with pretending I’m a nurse.  Hallelujah. 

I know that my posts have perhaps been less cheery and optimistic and inspirational than people who are looking for cheer under duress and inspiration in the face of long odds might wish.  But it’s not in my nature to be cheery and optimistic (nor, for that matter, dour and pessimistic).  While I can be quite emotional at times—ask my daughter about when she saw her daddy cry because I felt like I had failed to protect my son from unnecessary pain–like most people, I don’t function so well when enveloped in an emotional haze.  I function best when I try so far as is possible to rationally, objectively understand what is going on;  to see things as they are, not how I or others wish to see them.  Since the culture has a cheery, optimistic bias, and generally places more value in belief than in understanding, my bias for objectivity probably often comes across as pessimism and disbelief, but really, it’s not.  I felt it my duty to understand as much as I could of what was going on, and there is no other way for me to understand anything except through a dispassionately objective frame of mind.  So please forgive me if my part of the transplant communication has been less than inspirational. 

Besides, I have never really wished for me or any of mine to be anyone’s inspiration.  I would rather have preferred that our family had lived a quiet and completely unremarkable and uninspiring life.  We are, and have always been, just a rather ordinary little family trying to meet the challenges of life as best we can; it just happened that leukemia has twice comprised one of those challenges.  If there’s any inspiration to be found in our struggles, it would seem to me that it’s because, through luck, and grace, and tenacity and the support of friends and family, and God, literally, only knows what else, this ordinary little family has so far managed to survive.  If we could do it, anyone could.  If there’s any inspiration to be had, it’s in how ordinary and average we otherwise are. 

I’ll close with the Bible verse my son listed in his Senior biography for the church youth group as his favorite.  It comes from Job, which is an Old Testament anomaly I think most Christians (and Jews also) tend to ignore, as it tells a story about bad things happening to a good man, and it doesn’t make sense that an all-powerful God, good in all times and places, would let (or cause) bad things happen to his people.  But bad things happen to good people all the time, even good Christians and Jews.  Job offers an example of how to respond:

Naked I came from my

                Mother’s womb,

And naked I will depart.

The Lord has given and the Lord has

                Taken away;

Blessed be the name of the Lord.

(Job 1: 21)

And for now, the Lord has given again.  Blessed be the name of the Lord. 

Thus ends this episode of taking and giving. If the Lord decides again to take, we’ll start a new blog for whatever illness afflicts us then.

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