(*What follows is the opening chapter of A Tale of Two Transplants, a memoir I wrote about the experience of raising a kid who suffered two bouts of leukemia. )

Chapter One—Dad’s Office

I was growing increasingly aggravated, trying to keep my four-year-old daughter and seven-year-old son entertained in a doctor’s waiting room.   We’d arrived about 9:00 am.  When it got past 10:30, about the time I start getting those mid-morning hunger pangs which added to the aggravation, I was really close to taking the kids and packing it in.  I figured I could go anywhere and get this kind of service.  But just before finally heading out the door to leave, they called us back and into the examination rooms.

The kid’s Pawpaw, my Dad, was their doctor.  He was a family physician, a generalist, even as family practice had succumbed to the medical profession’s fetish for making specialties from generalities, and had itself become a specialty.   I figured a doctor with a family practice was as good as any for the nonspecific sort of ordinary medical issues of childhood.  A pediatrician might have been better, but that’s just a generalist with a specialty in humans of a certain age, which to me didn’t make a lot of sense.  Human beings aren’t butterflies.  They only metamorphose metaphorically.  Their bodies don’t drastically change from pupae to caterpillar to butterfly as they mature.   They mainly just get bigger, at least until puberty, when the sex hormones make for some significant changes in function and form for select parts of the body.  But even then, there’s no metamorphosis.

I was adopted at the age of about four and a half by Pawpaw.  I have never known my real father.  My mother refused to even tell me who he was, but I wasn’t stupid.  I had heard the whispers behind my back, and saw the strained looks, and caught the thinly-veiled innuendos at family reunions.  I knew there was some sort of scandal associated with my birth, but about that, she refused to talk.  And as soon as I was old enough to be dangerous in my wonderings about such things, about age twelve or so, she cut off all contact with her natal family, and forbid us, my sisters and me, to contact them directly.  This infuriated me.  To my reckoning, no one had to the right to decide or not by their autocratic decree what would be my history.  Biology decides that sort of thing, no matter how desperately a newly-minted Southern matriarch of a doctor’s wife straight from the projects of inner-city Birmingham might wish to object.

When the wife decided to have children (and yes, that is how it went down—the wife decided she wanted children and I went along with it, without much thought, as I didn’t figure I really had much choice in the matter anyway, as I was in law school and she was working and planned to continue working and she was a strong, independent woman who would get pregnant with or without my acquiescence, so I told her I didn’t mind if she had kids, but that, you know, I didn’t have a job yet, so she was on her own in that regard), I decided to teach my mother a lesson about biology.  I moved the family back home after law school, dragging the kid, by now almost two, in tow.  I wanted to show my mother that nobody gets to choose their family.  Family is not just a whim of someone’s mind, but is genes knitted together unto eternity that not even a willful Southern matriarch can unravel.

For the one and only time in our marriage, the wife followed my lead, and came back to Alabama with me.  The wife was also from Alabama—we’d met in high school—so she had family there, too, so it wasn’t all that drastic a move.  She’d been living in Louisiana while I went to law school in Texas.  The move back to Alabama was the first time we’d lived together more or less permanently in the same town since we’d married right before I shipped off to the first Gulf War.

It was about the time of the visit to my dad’s office, about four years into the move, that I began realizing what a terrible mistake I’d made.  I had never had a good relationship with my family growing up.  I’d mainly ignored them and they me.  In the house in Birmingham where we had moved when I was a rising third-grader and where I spent the remainder of my childhood and youth, my bedroom was alone downstairs, and I mostly stayed there, and away from all the upstairs drama with my sisters.  I had an older sister, a product of Mom’s first marriage, the one which mysteriously fell apart just about the time I came along, and two younger sisters, Mom and Dad’s blood progeny.

But having moved back to Birmingham with a wife and kid, I was no longer so distant now, what with obligatory involvement (because of the kids) in family reunions, birthdays, etc.  I ruffled feathers by my insistence that I no longer be treated as some skeleton hidden safely from view in the basement.  I demanded that me and my family be included as equals among my siblings and their families, and they did not like it.   The relationship quickly grew contentious.  By the time of the visit to Dad’s office that day, I was realizing with increasing clarity that me and mine would never be truly welcome in the family.

The situation had taken an ugly turn the previous Thanksgiving, a few months before the visit to Dad’s office that early spring day, when Dad saw no harm in turning his driveway into a shooting gallery for high-powered deer rifles for the brother-in-law and his son, even as my kids, four and six at the time, were playing outside (Dad has forty acres of woods surrounding his house).  The kids came in holding their ears and screaming bloody murder after the first few shots, as no one had even considered that the blast of a 30.06 might hurt their ears, standing only a few feet away as they were, and hilariously enough, even as the shooters’ ears were fully protected.  Thinking things over later on, it occurred to me that the whole incident was intentionally staged to send a message, something of an intentional reveal of how they really felt about us.  So the embers of my anger were still smoldering when we went to visit Dad’s office that day, and were stoked to blazing by the hour and a half wait to get called back for the checkups.

It wasn’t like Dad was seeing the kids for free or anything.  We had excellent health insurance coverage, which he duly billed when he saw us, just like he would any other patient.  Maybe the other patients generally waited an hour and half past their appointment times.  I don’t know.  I just know it made me mad.  It would have angered me to be treated that way at any doctor’s office, but more so with Dad because these were his grandkids, at least according to the law, even as I was learning how much thicker was blood than water.  I felt he would never have treated my nephews, his natural grandchildren, like this.

The checkups seemed to go on forever.  The kids were already restless from the wait and were trying to take advantage that their grandfather was the boss, running up and down the halls.  I tried to rein them in, but it was mostly useless.  They knew my words bore little weight at Dad’s office.  Dad always did a blood count on the kids as part of the checkup.  I think it was because he wanted to bill the insurance company for the lab work, since he had a machine on site that could do the work.  I didn’t mind.  It was just a little finger prick for the kids, which they learned to tolerate fairly well.  But this time the nurses slowed my son down enough to get him to do another one.  And then they wanted more blood from him, so stuck him with a needle in the arm.  The kid was always pretty good about such things.  He never cried, but was getting a bit annoyed at the interruptions.  I was mostly oblivious as to what might be going on, not suspecting anything was awry because nothing seemed awry, and the nurse’s explanation that the machine was fouling up seemed plausible.

Then, finally, Dad asked me to come back into his office for a minute.  I came back and stood facing him across the corner of the desk from where he was standing, and asked what was up.  He looked official and business-like in his white lab coat with his name stitched across the left breast pocket.  I was taking a day off work to get the kids their checkups, and had on a pullover golf shirt, khaki shorts and running shoes. Dad looked down at the sheet of paper laying on the corner of the desk in front of me and said, “Do you see these numbers right here?”  His index finger pointed to the top line of numbers on the lab report.  I answered, “Yeah, what about ‘em?”  “They mean Andrew’s got leukemia.”

My knees buckled momentarily.  Growing up in a doctor’s house, I had learned at an early age about cancer, the mysterious disease where the body infects itself with its own rogue cells.  It was one of the dangers, along with German tanks and Russian nukes and, because of our time at Ft. Bragg in the early seventies, of deranged doctors murdering their families, that as an innocent little boy of six or seven, I had learned to fear.  For whatever reason, the most fearsome of all cancers from my reckoning, even back then, was leukemia, where the life-sustaining blood coursing through the arteries and veins becomes an angel of death.  How could this be, I remembered thinking, that your body would betray you so?  What a terrible thing, to carry your killer in your veins.

Just for a few numbers printed on a sheet of paper, my body flooded with adrenaline, sending a silent scream from my gut to my legs and haunches, to my chest and head and arms that I should fight or flee.  But there was no way to fight or flee.  So, like a mouse in the corner when the kitchen lights are turned on, I did the only thing left to me.  I froze.  I didn’t know what to say.  I didn’t even think to ask the obvious question, “Are you sure?”  Of course, he couldn’t have been sure on one measly blood count, or even on several, if they were all from the same lab equipment.  And there would need to be a careful biopsy to know for sure.  But I didn’t know that at the time and he was my Dad and the kid’s doctor, so I didn’t think to question him.  After what seemed an eternity of standing there in silence feeling naked and exposed for the world to see, all I could manage was a mumbled question about what we should do next.  He said he’d call in a referral to the local children’s hospital and get back with me when he found out the details.

As I gathered the kids and headed out the door it seemed like I was floating outside myself, watching my movements in slow motion replay, checking that I was fluid and deliberate and effective in my actions.  And I could sense the company of other observers.  I could feel the eyes of everyone in the office upon me.  News like that travels fast in a doctor’s office, reverberating like a shock wave after a bomb explodes, and especially so if it is about the doctor’s own grandson.  I felt barely able to put one foot in front of the other, but I couldn’t let on to the kids that I knew anything.  I couldn’t let them know how afraid I was.  I couldn’t let them see my state of shock.  I put on my sunglasses inside, so no one could see my eyes, which, though not yet filling up with tears, would surely have revealed my anguished shock to anyone who cared to look.

Across the highway from Dad’s office was a newly-built MacDonald’s, complete with a play area.  While all McDonald’s are good, so far as parents of young children are concerned (if they are honest with themselves), this one was especially so, because of its location.  After its construction, the kids understood that anytime we went to Pawpaw’s office we would stop at McDonald’s afterwards as a reward if they were good, (but that was just a bluff which they probably saw through—I’d have been punishing myself for their misbehavior if I had denied them a trip to McDonald’s), and not through the drive thru, but inside in the restaurant, so they could play between bites of mysteriously-formed bits of what the restaurant claimed was chicken.

I figured I had to keep to the routine or they’d be suspicious, so that’s what we did.  We got our meals and sat down to eat.  Andrew normally got the chicken nugget Happy Meal and Eliza the hamburger Happy Meal.  They ate a few bites and begged to go play.  I let them.  Once I saw they were fully engaged on the slides and in the ball pit, I slipped away to the bathroom for a quick pity party.  There was thankfully no one in the restroom when I arrived.  I stood in front of the mirror and started bawling, and let it carry on for a good half-minute or so.  There is something cathartic about tears.  I know guys aren’t supposed to cry, but even as manly as I generally try to be, about some things, there is no avoiding it.  This was one of those things.  Aside from being hard to believe, it seemed so unfair that an innocent little kid might die before ever really getting the chance to live.

For Christ’s sake, he’d just learned to ride a bike.  Parents can’t help recalling what things were like for them at whatever age their kids are.  I was the happiest kid in the world at my son’s age.  I, too, had just learned to ride a bike, and spent every afternoon flying my little red bike all over Ft. Bragg, North Carolina.  I had just started school and learned to read, thereby discovering whole other worlds of adventure and imagination between the covers of the books I voraciously consumed.  I was so happy that I had to dream up things to fear (Nazi tanks, etc., previously mentioned that I learned about mostly through GI Joe comic books), though I didn’t get the connection between happiness and fear at the time.  Like my parents didn’t know it about me, I didn’t know what Andrew’s fears were.  He’d had a few bad dreams on occasion, mimicking his dad it seemed, but never anything specific he would tell, except for a gripping fear of death, which he thought of as nothingness, and which, truth be told, is always the sum of all fears.  Maybe the nonspecific fear we all seem to carry with us, and in my and Andrew’s case, from a very early age, is just the flip side of realizing that we will one day die.

Andrew had already had something of a tough time of it physically by the time of his diagnosis, having suffered mysteriously recurring fevers that lasted for days into weeks, where his only symptom save the fever was massively swollen lymph nodes on his neck.  The first time the fever struck was the Christmas after his sister was born in September.  He was a little over two and a half years old at the time, so fat that he looked like a Cabbage Patch kid, and the swollen lymph nodes made him look like a Cabbage Patch Frankenstein.  We later not-so-affectionately dubbed that episode the Twelve Days of Christmas Hell because it took about twelve days for the fever and swelling to finally subside; in the meantime, I had to sleep in the den on one couch while he slept on the other, so I could wake up and give him acetaminophen or ibuprofen, alternately every two hours, to keep his fever down.    The fevers would arrive at stressful periods—holidays, birthdays, etc., and fade away after a couple of weeks, only to reemerge, but less acutely, a few weeks later.  Each fever event usually had three acts stretching across two or three months.  We never figured out what caused them.  But as they apparently involved some sort of immune system glitch, there’s little doubt they had something to do with the subsequent development of leukemia.  Leukemia is a disease of the white blood cells, i.e., the immune system, and there was definitely something not quite right with his.  During one of his episodes, they had done that once-common childhood procedure, and pulled his tonsils, which are a part of the lymphatic system, which is sort of the information highway for the immune system.  To no discernible effect.  He kept right on getting the fevers.

I carried the burden of the diagnosis alone for about two hours.  It was a soul-crushingly lonely time.  But keeping to the routine so as not to upset the kids meant there was no time to slip away for a few minutes and make a phone call to the wife.  Nobody but her had my same interest in the knowledge.  Not even Andrew, innocent of such things, would have cared as much as we.  Certainly not my sisters and their families.  Not even the grandparents (one of whom already knew).  These kids and their problems were our burden to bear.  They were our project.  And half the project was in grave danger.  It was a crushing burden to bear alone, this dreadful knowledge, filling my belly with a queasy emptiness to match the abyss of despair in my heart.  But I needed some uninterrupted, private time with the wife, preferably in person, if not, over the phone, if I were to relieve the burden a bit by sharing it.  And I couldn’t get that so long as we were out and the kids were with me.

I finally got them home and called in a favor from my youngest sister—she lived just about a mile or so from my house and was off that day—and got her to keep them while I got in the car to drive out to the wife’s office.  But the wife called me as I was heading her way, returning an earlier call I had placed from the house.  I told her it was about the kids’ checkups.  That Andrew wasn’t well was all I could choke out before needing to pause.  Then, “It’s leukemia.”  The wife is not an overly emotional woman.  Up to that time, I don’t think I had ever seen her cry, and she didn’t bawl this time, but I could tell she was sniffling and wiping away tears as I described what little I knew as best I could.  We ended the conversation with her packing up to leave work and me turning around to go back home.   She said her leaving wouldn’t matter today, there was hardly anyone there anyway because of the holiday.  “What holiday?” I asked.  It was mid-April and I couldn’t remember any bank holidays for that month.

“For Good Friday.” She said.  Then I remembered—that was why I took off to get the kids their checkups–there wouldn’t be much happening because it was Good Friday, which had become something of a quasi-official holiday over the years as Hispanics (who are generally Catholic and keep the holiday) had increasingly emigrated to the Central Alabama area.  I looked at the calendar when I got home.  I’ve never been superstitious.  So naturally, aside from being Good Friday, it was Friday the 13th, 2001, a rare instance of superstition correlating with real life (according to superstition, bad things generally happen on Friday; Friday the 13th is especially bad so far as Friday’s go, and a really bad thing happened on Good Friday—they crucified the Christ—which only later did theologians recognize was actually good).  I still don’t believe in silly superstitions.  But at least I understand a little better why some people do.  It would really have been nice to blame all this on the triply-witched date that it occurred.

 

 

 

 

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