Saving Dad: The Final Chapter

December 12th, 2008 at 8:43 am by under News

Saving Dad: The Final Chapter

Biologists say, of all the creatures in the animal world, very few of them mate for life.  Humans like to claim they do, but with the divorce rate surpassing 50 percent, it’s debatable whether men and women can really back it up.   It is fact though, that Barn Owls mate for life.  Once they choose that eternal love, they never look back.  They build homes, raise families and work together to make sure their offspring survive a very turbulent world.  The bond is so strong that when one of the pair dies, the survivor refuses to go on living without its mate.  It will find a branch in a tree and stare at the trunk, refusing to eat, until it dies of starvation.

If humans followed the same practice, we’d call it extreme, but we’d also probably find beauty in a love so strong.  We’ve romanticized it in the past.  Romeo and Juliet anyone?  Barn Owls and Shakespeare don’t have much in common other than they seem to be attracted to tragedy.  But every once in a while, more often than you’d think, there are humans who get it right.  People who find a love so strong that it lasts a lifetime.  They build a home together and raise a family.  Those are the people you wish could live forever.  But inevitably, one of them dies first.  The tragedy though, is when one of them dies too young.

It was cold and windy, but the sky was pure blue.  In the distance Mt. Princeton, laced with a fresh coat of snow, stood tall over the stones that marked past lives.  Born on this day, died on that one, they all said.  Summarizing entire lives into a few words.  “Loving Father,”  “Rest in Peace.”  Surrounded by some of the tallest mountains in Colorado is a little town called Buena Vista.  Its no longer a “one horse town” but it still qualifies as a “one stop light” one.  It sits at just a hair under 8000 feet.  The air is thin and breathe comes hard to some.  And in its tiny cemetery a group of people huddled together to take part in the final chapter of a man’s life.

Father Rex wore the vestments of an Episcopalian Priest.  No longer the head of Grace Church, he’d driven back to fulfill a promise.  The wind filled and pulled hard at his white robe.  The material fluttered strongly in the air, almost threatening to take off and yank the stout 6 foot 4 frame of the man of God with it.  The pages of the bible, held tightly in both hands, rattled and refused to cooperate.  Partly from memory, Father Rex spoke the final passages.  “Ashes to Ashes . . .” he said as he sprinkled dirt on the gray and silver coffin.  Dozens of familiar faces watched silently and held their spouses close to fend off the sharp December air.  Sherry Thomas, my mother, looked on.  But aside from all the warmth and support her sons, family and friends tried to offer, for the first time in almost 44 years, she was alone.

Less than an hour earlier I had stood at the alter of the Church and haltingly, fighting back emotion, told a story about my father.  I bit my lip several times.  It was sore and swollen after serving as the final line of defense from total, uncontrolled sobbing. I struggled to remember what I’d planned to say, emotion clouded my brain.      “How do you want to divide it up?” I’d asked my brothers the day before.  We were talking about the life of our father and trying desperately to divide a man’s life into three parts.  It was just too difficult.  He’d done too much.  Meant too much to us all.    How could we possibly do justice for the man we called Dad?  “I want to tell a story he told me when I visited in October,” Scott said.  Mark began to reminisce about some of Dad’s funnier moments.  I wanted to tell the connection our family feels to Colorado and to thank everyone who helped our family in such difficult times.  And so the decision was made.  I was the first-born, but would speak last.

The disease that eventually took my Dad’s life was diagnosed in 1997.  The doctors told him he’d be lucky to get 5 years.  “Go home,” they said, “be with your family, there’s not much more you can do.”  Some might have taken their advice, given in to fate and waited for death.  My mother and father, always the optimists, decided they wouldn’t quit.  They began making phone calls and searching a new thing called the “internet.”  And it wasn’t long before they found a handful of specialists who promised some aggressive treatments that just might give them a chance.

And they seemed to work.  After 8 years, he’d endured countless surgeries, his abdomen crisscrossed with scars.  But he’d beaten the odds and was still living a full and enriching life.  As a family we’d almost forgotten that he was sick.

But that all changed in the summer of 2005.  That’s when the cancer began to catch up.  It was the first of a series of rollercoaster rides we all began to go on.  Not long afterward, I wrote it all down.  I wanted to keep the memory fresh.  If you’re willing, I’ll tell you the story of my father’s first brush with death and a little about the man and the family he raised in the process.  At the time, I called my story, “Saving Dad: Colorado by Christmas.”

My Mother always downplayed any illness.  When she learned she had breast cancer, she told me it was not a big deal.  ‘Just a double mastectomy ya’ know . . people have them all the time. ‘ was the way she played it.   So when I got that phone call near the end of July 2005, it didn’t take long to realize things were different.  This was beyond serious.  “You’re dad isn’t doing so well,” she said.  Her voice cracked.  She was calling me from the hospital in Colorado Springs.  It was mid morning there, and she hadn’t gotten a lick of sleep.  She’d driven my father to the hospital in the middle of the night.  A two-hour drive through the mountains.  Curvy roads, pitch black.  A part of the country where radio stations can’t even pierce the darkness.

“What do the doctors say,” I asked.  I already knew part of the answer; I just didn’t know how bad it was.  There was a pause.  A beat in time that lasted for what felt like an eternity.  My mother was gathering her composure.  A woman who I had never seen lose it.
My parents had always been a rock for my brothers and I.  They were old school.  Parents don’t argue in front of the kids and they certainly don’t cry.  That was how they saw it, a doctrine they lived by.  And now, I could feel the wall start to crumble.  “I think you should come,” she whispered into the phone.  That was all I needed to hear.

I don’t really remember much of the following hour or so.  My hands were moving as quickly as they could.  Air passage to Colorado Springs booked.  A huge expense on such short notice, but money didn’t matter.  I started throwing clothes into the suitcase, while every possible emotion filled my head.  “Why!?” I think I screamed more than once.  Why would this happen to such an incredible man?  The most honest man I knew.  A man who rarely drank, never smoked and walked the straight and narrow.  A man who put his family first in every endeavor.  Who loved his wife, and guarded her from all the darker aspects of life.  “Why!?”  I did scream it.  I was in the car, and screaming at the top of my lungs as I raced to the airport.  My voice garbled with emotion.

My father is named Warren.  A slightly unusual name.  Just a month before I’d been sitting in my parent’s brand new retirement home in Colorado.  Right on the Arkansas River.  It was their life long dream to build a house in Buena Vista.  A town they’d honeymooned in almost exactly 40 years before.  We were sitting there.  I was on the couch.  He was in a leather recliner.  “I never liked my name,” he admitted.  We’d been talking about our family, in particular, why my parents chose Brett, Mark and Scott as the names of their three boys.  I’d turned the subject to him.  He rarely talked about himself.  And he admitted he didn’t like his name, something that was a small shock to me.  Warren, in the opinion of an adoring son, was the strongest name in the world . . . and he would have preferred another.  It’s one of those memories that sticks with you.

The memory of climbing a mountain sticks with you too.  I was visiting the new home in June, and my dad was as spry and fit as ever.  When that conversation took place, we had just returned from a Rocky Mountain exploration of sorts.  A daylong journey in the Collegiate Peaks that ring that retirement home.  We’d driven up Buckskin Gulch, on a rocky and hole laden mining road.  We were up more than 12,000 feet, when we had to leave the car for the last 300 yards.  The goal was Kite Lake.  By the end of that short hike in that thin Rocky Mountain air, I was certain my parents would be nearing a heart attack.  I turned around.  I was more winded than they were.  30 years my senior and he was in better shape than me.  How could things change so quickly?

Near Leadville Colorado, August 2008

Near Leadville Colorado, August 2008

My father has liver cancer.  It’s a slow growing form of the disease called Carcinoid.  It’s not effectively treated by conventional medications.  Chemotherapy and radiation don’t work.  But a cocktail of drugs can slow its growth down.  If you met my father from the time he was diagnosed seven years ago, up until that point, you would have no idea he was a sick man.  But now something had gone terribly wrong.

My brother Mark greeted me at the airport.  He’d gotten a similar call from Mom and had immediately jumped in his car.   It’s about a nine-hour drive from Kansas City to Colorado Springs.  He’d made it in less than eight.   Scott would be coming in from Los Angeles the following day.  The three of us were marshaling our forces to save dad. . if we could.
“He doesn’t look good.”  Mark began to set the table for what I was about to see.  “He’s yellow,” he said with an incredulous sound to his voice. “He’s yellow?” I said almost rhetorically, as I tried to soak it all in.  It’s a classic affect of liver failure.  Without the cleansing ability of the liver, toxins begin to build up in the blood, and eventually turn the body an awful yellow color.  When I walked into that hospital room, I discovered the second classic symptom.  water retention.  My dad was blown up like a balloon.   “How are ya feeling?” I asked, trying to put on my best face.   “I’ve been better,” he replied in a weak almost inaudible voice.  He was awake though and lucid, although his thoughts came at a snails pace.

It was almost unbearable, to look at this weak, puffy, yellow, sickly man and imagine that just a month before, we were climbing mountains together.  But there he was, my father, a man I’d spent the better part of my life trying to please, and now he was lying there dangling over the edge of death.
“The doctors say he needs a liver transplant if he has any hope to survive.”  My mother was speaking now.  The Mother I was familiar with had returned.  The one who could calmly assess a situation and put on a brighter face.  But I could tell she was shaken and it wouldn’t take much to pierce her facade.  “I spoke to his doctors in New Orleans, and they say we have to figure out a way to get him there.”
The hospital in Colorado Springs, although nice enough, doesn’t perform liver transplants.  And with my father’s condition stabilized for the moment, it was up to my brothers and I to put together a desperate plan to keep him alive.  His doctors, who are Carcinoid specialists, were in New Orleans, at a hospital that does perform liver transplants.  And so the next few days were laid out for us.  It was New Orleans or bust.

Our family spent every summer in Colorado.  Other families flew to Orlando, took cruises, visited family in far off places.  We loaded up the family truckster and drove to Colorado for 2 weeks every summer.   In those days you didn’t have DVD’s.  No videos, or video games.  Just the boring Kansas scenery and two brothers banging into you in the back seat to keep you occupied.  But we did have Mom, or Sherry for anyone else.   A stay at home mom who gave up a teaching career when she had me.  Dad was the local optometrist; Mom was the dutiful doctor’s wife.

On those long drives from Southeast Kansas, Mom was the entertainment.  She would lean her arm on the front bench seat of the family station wagon and prop a book in front of her face, and read out loud to us.  We would listen, letting our imaginations run wild.  Every year there would be a new book; a new mental adventure and we loved it.  We listened to her read “Where the Red Fern Grows.”  “Summer of the Monkeys.” “Little House on the Prairie.” “Old Yeller.” until her voice ran coarse.  It passed the time and before you knew it, we were in the mountains and nearing our first campsite.

Now I was driving, Mom was my passenger and we were headed past all those campsites, streams and memories on our way to the home she and my father had built.  And now I was doing all the talking, I was explaining the plan Mark, Scott and I had concocted to give Dad a chance to live.  We would only have a few hours at the house I explained.  She would have to pack enough clothing for her and Dad to last several weeks.  We were going to have to winterize the house, to shut it down for an undetermined amount of time.  That thought was especially painful to her.  They’d only been able to live in that house for a little more than a month, and now they were leaving it, possibly for good.  Mom listened to me in silence.

“Mark will drive back to Kansas City where he’ll start trying to find a place for Dad to stay”, I told her.  We were assuming that Dad would be able to hold on long enough for a liver to become available and we’d decided the best place to wait was near Mark in K.C.  Scott was going to drive her car to Kansas City as well.  She would need transportation once everyone was back in Kansas City.  And I was going to fly with her and Dad to New Orleans and get him checked into the Hospital.

A Liver transplant, any transplant for that matter, is not something that happens overnight.  You have to get on a list.  And in order to get on a list you have to be evaluated.  And in order to get evaluated we needed to get Dad to New Orleans.   The direst cases get first priority.  And so in a surreal twist of reality, we needed to hope that Dad’s condition would be deemed dire by the powers that be.  The worst cases can often get a new liver in a matter of weeks.  Otherwise, it could be months, even years.  My brother’s and I were taking a crash course in transplantation and learning quickly.
“What about Sidney?” she broke her silence.  Sidney is the family cat.  An animal that has enjoyed more luck and love than can be expressed in a blog.  Without three sons to dote on, Sidney had become my mother’s fourth child.  “Sidney will be fine,” I assured her.  “Mark is going to take her with him to Kansas City.  She’ll live with him for the time being.”  A sense of relief seemed to wash over her.  At least one member of the family would have a certain future. .  a small comfort under the extraordinary circumstances.

We pulled into the driveway and took in the sight of a house just recently finished and barely lived in.  The steps to the doorway were labored.  My brother’s and I, together at the home for the first time, were about to shut it down.  It was unbearable to watch my mother walk around the house, uncertain of what to take and what to leave.  She pulled a little glass bell from a curio cabinet.  It was a keepsake her great grandmother had purchased from the 1893 World’s Fair in Chicago.  “We have to hide this,” she announced and headed into the basement intending to bury her little family treasure from imagined thieves.  My brother Scott followed her.  I don’t know what was said down on that bottom floor, or what might have triggered it, but for the first time in my life, I heard my mother cry.  Not the soft tears she expressed at her mother’s funeral, but the moans of a woman in agony.  The cries of someone whose entire world has been turned upside down.  “You’re father never got a chance to enjoy all this . . ” I could make out.  “Why is this happening?”  Scott was there to hold her, comfort her the best he could, but none of us knew the answer to that question.  A question we were all asking ourselves.

Dad was strong enough to walk a few steps or to teeter would be a better way to describe it.  On swollen yellow feet, we needed him to be able to walk at least 30 feet.  That was approximately the distance he’d have to travel to make it from a wheelchair on one side of airport security to a wheelchair on the other side of the metal detector.

Scott dropped us off at Denver International Airport.  Mom and I helped Dad into a waiting wheelchair and we all said our goodbyes to my youngest brother.  He was off on a lonely drive to K.C. to drop off my mother’s car, and then a flight back to Los Angeles and his wife Kim.  Scott’s role, at least in the initial plan, was nearing an end.  For me and especially Mark, it was just beginning.

Air travel is annoying to someone who is in good physical health.  It is downright terrifying for someone who is on the verge of collapse.  My mother and I prayed that Dad would be strong enough to make it through security and onto the airplane.  If he wasn’t, or if the airline employees decided on their own that he wasn’t, then our little plan would fall apart.  But today we were lucky, or as my mother would say, blessed.  The flight to New Orleans was uneventful; my father slept most of the way.
Immediately it was apparent that there is a difference in health care from hospital to hospital.  I’d never thought of this, I always thought medical care was approximately the same from site to site.  But clearly the people in New Orleans knew what they were doing.  You wouldn’t think of it that way.  You’d expect New Orleans to practice some kind of third world medicine or witchcraft, but despite the rather dilapidated appearance of the building, the doctors were quite good.  Without hesitation Dad was put on antibiotics and an anti-diuretic was used to get the water off his body.  In one night he lost, or actually peed away more than 10 pounds.

The next day, after assurances by the doctors that I wasn’t going to leave my father only to have him die once I’d gone, I was scheduled to get on an airplane back to Grand Rapids.  A battery of tests was scheduled and when I arrived in my father’s room, they’d already whisked him off to begin them.  I found him on a lower floor with a whole new batch of IV’s in his arms and all sorts of electrodes sticking to his chest.  My mother was by his side, a place during this whole ordeal she’d never left.  “I have to go now Dad.”  I told him.  He looked better, still awful, but a better.  “I know,” he said, “don’t worry about me.”  His words were slow and slurred but I knew he meant.  Mom and Dad, no matter what troubles they experienced had never burdened their children with them.  He really didn’t want me to worry about him, but it was a request he knew I wouldn’t honor.

When my brother’s and I were together in Colorado, we went to a little restaurant on the banks of a small stream.  “Taste of Colorado,” it was called.  It was a restaurant recommended by the friends we were staying with while Dad was in the Colorado Springs Hospital.  The restaurant sold wines from Colorado and that night Mark, Scott and I probably drank most of them.  We started with a bottle of Merlot, and talked about Dad’s condition and what the doctors had said.  Then we had a Cabernet, and talked about what this was doing to Mom.  A bottle of Chardonnay and the conversation turned to all those glorious family trips.  A bottle of Pinot and we spoke of the wonderful parents with which we’d been blessed.  It’s uncertain how many bottles in all that we consumed.  But by the end of the night, quite close and quite drunk, we’d made a family pact with one another.  We would have Dad back in Colorado by Christmas.  It became our mantra for that entire trip.  Our battle cry.  “Colorado by Christmas.”  It was all the hope we had left.

Now as I stood next to my dad in that cold barren hospital room I wasn’t sure if we could keep that promise.  He looked so weak, so uncharacteristic of a man who I’d grown up believing was the strongest in the world.  I looked at him, it was hard to make eye contact because I didn’t want him to see me cry.  And I said, “I love you.”  Words, I think I’d only told him once before.  I love my parents and I know they love me, but it has always been unspoken, yet this time they had to be said.  “I love you too,” he said.  And we just stood there silent for a moment.

As I turned to walk away, he said “I’ll see you in Colorado.”  I looked at him and said, “Yeah, I’ll see you there.  Colorado by Christmas.”  But this time I didn’t have the benefit of alcohol to buoy my spirits.  They were some of the hardest words I’ve ever muttered, because I didn’t want to lie to my Dad, and I wasn’t sure if it was a promise that we would be able to keep.

Dad and I didn’t always get along.  Those were the harder years that perhaps I’ve chosen to overlook.  But on that flight back to Grand Rapids, I found myself trying to remember everything.  Every conversation, every interaction.  I didn’t want to forget a single moment.

My parents may have argued during their marriage, but their kids never knew it.  They had a strict rule that parents don’t argue in front of their children and they never broke it.  I, however, didn’t have any such rule and during my teenage years, I argued often and loudly with my father.  My brother’s remember some of those arguments better than I do.  They were on the frontlines of a battle between a father trying to enforce his strict life rules and a teenager trying to explore the beginnings of adulthood.

Dad was the head of the household.  There was no question about that.  My mother could certainly move him and influence him in untold ways, but when it came to discipline and enforcing the rules of the home,; Dad was the “hammer.”  And the “hammer” often came into conflict with his wayward son.
I can remember yelling at the top of my lungs that his rules “weren’t fair.”  That his discipline was too harsh.  That I needed to have the freedom to enjoy life and to explore it.  But often, I was the cause of our conflict.  I wasn’t exactly the ideal son during my teen years.

There was the time, after prom, that Dad went through the car and found several bottles of alcohol, not so cleverly hidden in a compartment.  He brought them inside.  “Are these yours?” he stated more than asked.  His eyes gleamed with fury.  By this time, I was equal in stature with him, he had a few pounds on me, but I was taller by at least a few inches.  He didn’t flinch, “I asked you a question,” he said.  I was stalling, trying to come up with a believable excuse.  There wasn’t one.  “They’re mine,” I said defiantly.  In years past I was able to blame every transgression on my best friend Jeff.  He was my patsy.  I’m surprised he stuck through it all those years.  But he was my best friend and I guess that’s what best friends do during teenage years, they take the fall.  Amazingly, he’s still my best friend, and probably relieved that I’ve long since given up the practice of serving him up to take the blame.   It’s one of those lessons that I learned the hard way from my Dad.  When real men screw up, they admit their failures and deal with the consequences.  Honesty.  It is one of my father’s most desirable traits.  A trait I now attempt to practice as faithfully as him.

But at that time, I’d decided to take a stand.  All my other friends drank, some of them with their parents knowledge.  I thought I should have that right as well.  Dad would have none of it.  There must have been four or five unopened bottles of vodka, bourbon, and beer.  And by the end of our argument I was opening each one of them and dumping them down the sink.  “What do you want me to do?” I asked as the last drops of Smirnoff fell from the bottle.  “Would you rather me drink with your knowledge and call for a ride if I get too drunk? Or drink behind your back?”  “I don’t want you to drink at all,” he answered, his eyes still on fire.  The lines were set.  The rules would not bend.  And I still hadn’t learned my lesson.  We would continue to have conflicts, some bigger than this one.  I would push the limits as hard as I could, but my dad never broke.

It wasn’t until I got out of college that I realized what a sacrifice he had made.  He chose to force me onto his path of the straight and narrow at the expense of a close relationship with his son.  It is a sacrifice, too many parents these days, are unwilling to make.  I give my father full credit for the person I have become.  He could have given up, said its my life to ruin and then gloatingly said, “I told you so,” when I ultimately crashed and burned.  But he didn’t.  He risked his relationship with me, near fistfights, and all out brawls to keep me in line.  And now as I sat on the plane back to my Michigan home, I decided I would risk it all for him.

The tests came back bad.  And in a way, that was good.  Dad had almost no liver function and that meant he could likely get a high priority on a liver transplant list.  There is a number system, based on certain test results that I don’t entirely understand, that determines the need for a transplant.  Those who test between 0 and 10 are the least likely candidates.  It could be years, maybe never for someone who was rated at say, nine.  Between 10 and 20, the wait could be as long as 16 months according to some websites.  Between 20 and 30 the time drops to 60 days, in many cases less.  30 to 40 is the most extreme, without a transplant in a matter of weeks, the patient is not expected to survive.  The doctors determined Dad would probably fall into the mid to high 20′s.  It meant he was very sick, but he also had a very good chance to get a liver in a relatively short time.  There are so many other factors that play into this, but my intent is not to write a medical journal, instead to put my family’s experience into words.

When I arrived back in Grand Rapids, I found that Mark was already hard at work in Kansas City.  “I found a place for Dad to stay,” he said in a phone call.  It was a house for rent in a neighborhood not far from him.  This was the second part of our plan, and with Mark’s characteristic diligence, it was starting to form.  We would bring Mom and Dad back to Kansas City to wait for a liver to become available.  In Colorado, Mark and I had argued over this.  I wanted to find an apartment or hospice or something with assisted care in New Orleans.  “I don’t want to risk moving him,” I had argued.  “What if a liver becomes available and we can’t get him back to New Orleans in time?”  Mark though wanted Dad nearby where he could help if need be.  “It’s better to keep him close,” he stated, “they hate New Orleans, its dangerous and dirty.  And if he should die, I want him to be near family.”  Ultimately, Mark’s point of view won out.  Through hindsight and the course of later events it would become the most important decision either of us made.

I wasn’t sure if Mark really knew what he was getting into.  He was a new father.  His wife Jenny had just given birth in June.  Annabel, was a beautiful little girl, but from the outset was extremely colicky and never, never, slept more than a few hours at night.  Mark would have to take care of an infant who was proving beyond difficult and in addition take care of Dad, whose care, could require a great deal.

If you aren’t aware of this, I’m a journalist who works at a local station in Grand Rapids with the call letters of WOOD.  At that time in my career I was the Weekend Morning Anchor.  I also was the managing editor on Saturday and Sunday.  It was on a Sunday near the end of August that the lead for our morning broadcast was a hurricane called Katrina.  A hurricane that was gaining strength and headed straight for New Orleans.  I’d been keeping a close eye on it since the moment it had formed.  “What’s the latest on Katrina?” I asked my producer as I walked in the door to the station at 6 in the morning.  “Still churning in the Gulf, and still headed towards the Crescent City,” she replied.  To my producer, Katrina was a great news story but she was unaware that I was more interested in the hurricane for personal reasons.

Just a matter of weeks before we had successfully transplanted my Mother and Father to K.C.  It was a relief to know they were safe in the heartland of the country, but New Orleans was where he would get that liver transplant.  At the time, I remember fearing a hurricane could delay a transplant possibly by weeks.  As I went to bed that night, I caught the news, Katrina had taken a last minute turn the reporters on the scene said.  The city had been spared.  I slept well that night, assured that everything was still on track.

The next day brought despair.  The levees had been breached, the pumps couldn’t keep up, the city was beginning to fill.  I made a call to my parents, “are you watching this?” I wanted to know, “what about the hospital?”  As the news began to filter in, it wasn’t good.  So many people displaced, rescuers rushing to save lives.  I don’t need to describe much more, we were all watching the greatest national disaster this country has experienced unfold.  But this was personal.  Just as we had gotten my father on a transplant list, a hurricane had dashed our hopes.  The hospital was underwater; there were stories of patients dying there in their beds.  And I was certain, before this was all over, my father would end up another casualty of Katrina, despite being hundreds of miles away.

It’s funny how life can deal what seems to be a fatal blow, and yet in the darkest moments of despair a new unseen avenue of light will present itself.  Growing up, the pastors would always say, “When life closes a door, God will open a window.”  I’m not particularly religious at this point in my life, and look more often to reason than religion, but my experience over the past year, has certainly given me something to think about.

But at that time, I was mad.  Mad at God, and I had reason to be.  One of my closest colleagues at WOOD was going through a similar, and even direr situation with his Dad.  Brad and I have been working together for several years now and have grown close, due in part by our shared experience with our fathers.  Brad’s Dad was named Don.  I’d met him on numerous occasions.  An incredible man who rivaled my own father in his zest for life and commitment to doing right.  Don Edwards was one of the kindest, gentlest men I knew.  He had lived his life dedicated to providing for his wife and his two sons.  And Don Edwards had cancer.  Not a slow growing cancer that would afford Brad years to enjoy his father’s company, but a perverted, aggressive, unyielding cancer that put a fast moving clock on Don’s life.  It was cancer of the larynx and despite every treatment attempted, some even of the experimental variety, it refused to wrest its grip on Don’s life.

Brad was suffering.  You couldn’t help but notice.  He was watching his father die and was powerless to prevent it.  We once painfully joked with each other, “wouldn’t it be funny,” I said to Brad, “wouldn’t it be funny if our Dad’s died on the same day?”  He broke into laughter, “yeah, that would be a real riot,” he replied.  We share the same kind of Dark humor, it’s one of the things that has made us fast friends, but on that day the humor was as dark as it gets.

Later that summer Brad and Don said goodbye for the last time.  Don died at his home in the arms of his family.  It wasn’t a “pretty” death, Brad would later explain, but exactly why it wasn’t “pretty” he didn’t want to describe.  He did, however, get to be with his father in the final days, to let go of the man he worshiped and modeled his own life after.  “In the end though,” he said, “In the last few minutes, it was peaceful, he just stopped breathing and left this world.”

At the funeral, Brad was brilliant, describing his dad and all he’d accomplished.  Brad’s brother Matt was equally as articulate.  And it made me wonder if I could be as strong in a similar situation.  If I would be able to stand in front of room full of people and recount the reasons my Dad is so great.  Or would I shrink into a pile of human regret and sob away my chance to profess all Warren Thomas meant to me.  I didn’t want to find out.

There was now no chance of getting a transplant in New Orleans.  There were questions as to whether the hospital would be up and running in less than a year.  And so my parents were forced to start over.  We now needed to find a new transplant program, and through a twist of fate, my mother accidentally got connected to a hospital in Chicago called Northwest.

The chances for a transplant within the near future were now starting to look remote and Mark and I started to explore other avenues.  One possibility was to become a living donor.  It is a surgery that has begun to gain momentum and is performed more often each day.  The liver is the only organ in the body that has the ability to regenerate.  If you take half of it and donate to someone else, the remaining half will grow back.  The same is true for the recipient. Within a matter of months, both subjects will have a full sized liver.  The only requirement is for the donor and recipient to have the same blood type.  At one time I might have known my blood type, but had since forgotten.  That day I headed over to the blood center on Fuller in Grand Rapids, with the intent of donating my blood and learning my type.  O positive.  It could work.

Mark was also a positive match, but we were now faced with a new obstacle.  Money.  A transplant can cost several hundred thousand dollars.  For a living donor, twice as much.  We were looking at nearly 400 thousand dollars and had just found out, insurance wouldn’t cover it, or at least it said it wouldn’t cover it initially.  Mom and Dad could probably come up with the money, but it would put a serious dent in their retirement savings.  And then there would be anti-rejection drugs that could cost as much as 30 thousand a year.   Mark and I started to explore other avenues where we could help defray part of the cost.   And the news of my fathers condition continued to improve, maybe there was hope yet.

The end of September now, and Dad had slowly gained strength.  He was more himself now.  The tests were showing whatever treatment he was receiving was starting to take hold.  But the doctors from New Orleans, now operating out of Shreveport, were convinced he still needed a transplant.  My mother was starting to have doubts.

A transplant carried huge risks.   Rejection was a real and possibility and then what?  She worried that Dad wouldn’t accept a live donation from any of his sons.  Just flat out wouldn’t allow it.   And she was having trouble getting the information she needed for other organ donation programs.  Then one day after dozens of phone calls, she either hit the wrong button or someone transferred her to the wrong place, but she unknowingly ended up speaking to a person at Chicago’s Northwest University.  The game had suddenly changed.  Within a week my parents were in the Windy City, meeting with doctors who specialized in Carcinoid Cancer and Liver Transplants, and after another battery of tests, the doctors had something to say.

“We don’t think Warren is a candidate for a liver transplant,” they announced.  They couldn’t explain why, but my Dad had improved so significantly that they felt he wouldn’t make it onto a transplant list.   My mother called it a miracle.  And maybe it was.  Things could change, the doctors warned.  But at that point, it mattered little.  My father still had cancer, but for the time being his liver was doing fine.  The doctors scratched their heads over the whole thing.  If his tumors had caused his liver to fail, he would have continued to get worse.  But since he had shown such a remarkable improvement, it must have been something else.  There was speculation about massive infections that mimic the symptoms of a liver giving up, but no concrete explanation.  My parents didn’t care; they were given a new lease on life.

On December 31st, 2006 I stepped off a United Airlines flight and breathed in the cool Rocky Mountain air.  To the West were the Mountains, a hazy shade of blue.  You could make out Pikes Peak, its crest exceeding 14,000 feet.  As I pulled my bags out the automatic doors I was greeted by a welcome and familiar voice.  “Welcome back to Colorado,”  It was my Dad.  He extended his hand.
My sister in-law Jenny often jokes about how our family interacts.  She calls us a “professional” family.  We don’t express allot of emotion, greeting my father has always come in the form of a handshake.   But this time, I took his hand, pulled him close and gave him a hug.

On that summer night in Colorado, my brothers and I had made a pact.  With our father in the hospital and on deaths door, we had made a promise to each other to keep our family intact.  And now, in a world where so few dreams come true, we were living one.  As we sat around the fireplace exchanging and opening gifts I looked around the room.  Both my Brothers were there, Mark and Scott with their beautiful wives.  Annabel was giggling.  And sitting on the hearth, like they always did in the past, were my Father and Mother.  With a backdrop of some of the most incredible mountainous scenery in the world, this is what I was looking at.  It was perhaps, the most beautiful sight of my life.  We made it.  Around the world Christmas is celebrated on the 25th.  My Christmas the year of 2005, came on December 31st.

It was an optimism, was tested several times in the three years that followed, but with each setback, Dad seemed to find the reserves to pull through.  Then came the middle of November, 2008.   Dad was in the intensive care unit in Salida, a town about 30 miles south of Buena Vista, when my mother called.  “I don’t think you should come,” she said.  “But I want you to know that your father isn’t doing very well.  The Doctors think he may be at the end.”  Her voice was strong.  “How long,” I asked.  “Days, maybe weeks,” was her reply.  We’d been through some scary times in the past three years.  Dad’s health had improved, only to fall back again.  But each time he seemed to find a reserve that no one thought he had.  The doctors called him the “rubberband man.”   It was a tribute to a man who seemed to be able to rally from near death.  This time the doctors weren’t giving him much credit.  But it was still a blow.  In the spring of 2006 I’d traveled with my mother and father to Switzerland for a cancer treatment that was not approved in the United States but was practiced in nearly every other developed country.  We had another trip scheduled for the 8th of December.  This latest turn would definitely mean we’d have to postpone the trip into January, maybe later.

I phoned my news director.  “It looks pretty bad, the doctors have recommended hospice” I said rather matter of fact.  She didn’t hesitate, “You have to go.”  She’d lost her own father early in life and was steadfast, “Pack your things and go to Colorado.”  I’d been on the fence for a moment.  I’d been saving money for another trip to Switzerland, I was still holding out hope that the doctors, once again, would be wrong.  But the encouragement was enough to knock me off the fence and into action.

But this trip, the mission to “save Dad” was different than the one I’d embarked on more than 3 years ago.  This time I drove.  And this time “I” had become “we.”  In the span of those three years I’d married a wonderful woman named Gina and we’d brought a little girl named Gabriella into this world.  She was now 21 months old and “Poppy”, the name she’d given her Grandfather, was one of the words in her vocabulary she used most often.

My little Family

My little Family

It would be a long drive.  19 hours across 5 states.  But it gave me time to reflect.  To remember all those times our family had packed up the family station wagon, hitched the pop up camper on the back and headed west to Colorado.  It was a yearly trip that we all looked forward to.  I remembered all those times we camped at “Happy Meadows.”  My first trout.  Dad taking it off the hook.  Hikes, Driving up Cottonwood Pass. I could almost smell the campfires.  Now I was driving my own family to Colorado.  The torch, in a sense, had been passed.  It was, as I later told my boss, “therapeutic.”

Dad seemed to rally with all of us at his bedside.  We brought him home.  Set up a hospital bed in his room.  A wheelchair to bring him into the living room.  The hospice nurses were amazed.  Within a few days they were saying we should consider taking him out of Hospice and getting Home Health Care.  It was encouraging news.  Maybe Dad had another “miracle” in him.

Dad loved fires.  And during those days in Colorado, I built them and rebuilt them in the Fireplace.  He warmed his emaciated body next to them.  In his younger days he was a solid 175 pounds and 6 feet tall.  Now he was barely 130.  He slouched in his wheelchair.  What were once strong and broad shoulders were now bones that poked their way out from under layers of clothes.  He no longer resemembled the man I’d grown up with, loved and feared.  But he was still lucid.  His words came slow, but we could talk.  And when we weren’t talking Gabriella was.  She loved to talk to her “Poppy.”  You couldn’t understand most of it, but she’d stand in front of him and apparently lecture him on the happenings of the day.  He smile and say “really” or “what else happened.”  It was a sweet time.

Throughout his entire fight with cancer, Dad exuded an optimism that proved to be infectious.  And this time was no different.  He was already making plans for his recovery.  “First I’m going to walk to the computer room,” he stated.  It was a room maybe 15 feet from his bed.  To anyone else it was a distance of maybe 5 or 6 steps.  But for someone in Dad’s condition, it might as well been China.  Still he plotted and schemed.  Once he’d accomplished the computer room, it would be the hallway, then the family room.  Soon he’d be walking outside and building his strength.  He and Mom would be taking that trip to the Grand Canyon in no time.  It seemed impossible, but as I knew from my own personal history with him; this was a very stubborn man.  If he said he was going to walk to the mailbox, well you just couldn’t help but believe it.

After a week and half, we had to go.  Dad seemed to be getting better and I needed to get my family home.  It was a painful goodbye.  I could remember that moment when I’d left him in New Orleans over three years ago.  “We’ll see you soon,” I think he said this time.  I’m still not sure what those words were.  He was sitting in his wheelchair.  I bent over, gave him a light hug and told him I loved him.

As we left the mountains I watched them disappear in the rearview mirror.  I could remember the sadness from those Colorado vacations.  As a boy I’d ask Dad from my backseat perch, “How much longer will we be able to see them?” “Maybe 30 more minutes,” he’d say and then they’ll be gone.  I’d try to stare at them as they grew smaller.  Never look away.  But then something would distract me and the next time I looked up, they’d be gone.  “Don’t worry son,” he would assure me.  “You’ll see them again next year.”

Now I was driving out of Colorado and glancing at the mountains in the mirror.  Each time they grew smaller, until they became a light shade of purple and looked like clouds.  And in my mind I wondered if I’d ever see my Dad alive again.

On December 2nd, my mother sat next to the love of her life.  He was in their bedroom on an imported hospice bed and it was near the end.  A rally for his family earlier that week had quickly taken a turn.  The plan for recovery he’d mentally worked out, was no longer an option at this point.  The “rubber band man” had no reserves to tap into any more.  His body was shutting down.  Breathing was labored, shallow and came in sporadic bursts.  “He’s fighting it,” the hospice nurse said to my mother, “maybe you should tell him its okay to let go.”

Sherry took a deep breath and looked at the man to whom she had committed her life.  The man who helped her raise three children.  Who had provided a roof, and food and love and joy for so long.  She reached for his hand.  Held it tight in her own.  Touched the wedding ring she had put on his finger so many years ago.  “Warren,” she said, her voice quiet yet controlled.  “When we were married, we put an etching on the inside of our rings, do you remember?” She asked.  He was quiet, his eyes closed, she went on.  “It says ‘Love Eternal’ and that’s exactly what it means.” She paused.  “I have always loved you and will always love you, and one day we’ll be together again in another life.”  The voice waivered, tears began to fall.  “You’ve been a wonderful husband and we’ve had a wonderful life, but now you need to go.”  She gave him permission to leave this earth.  It seems it was what he needed to hear.  He’d been fighting it for several hours, perhaps trying to protect her and be near her for as long as he could.  But now the woman he loved was saying it was okay to die.  They’d fought this cancer together and held it at bay for some time, but the disease had proven too strong.  With my mother sitting by his side and holding his hand, my father breathed his last breath.  He was 69.

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15 Responses to “Saving Dad: The Final Chapter”

  1. Karl says:

    Brett,

    I’m so sorry for your loss. Thanks so much for sharing this wonderful story. Your father, mother and brothers all sound like great people.

    There are so many people go through this type of experience, but few have the talent to write it as well as you have.

  2. Cara Russell says:

    Brett:

    Thank you for sharing this story. I’m so very sorry for the loss of Warren; he and your mom have been a blessing to this town. I regret that I was out of town for his funeral and unable to offer my sympathy in person.

    Sincerely,
    Cara Russell
    Buena Vista mayor

  3. Lord Vader says:

    I find your lack of faith in HERBAL cures disturbing. You put your faith in “doctors” and “big pharma”, and they did nothing but waste your time when you should have been pursuing other NATURAL routes. Look into milk thistle, elderberry, and turmeric curcumin.

    Did you know Manuka honey KILLS MRSA. The “superbug” doctors say can’t be beat by modern medicine? Shows how much they don’t know, and need to RELEARN from ANCIENT / biblical times.

    People.. you need to stop eating all this crap food at the supermarkets and go to a health food store or some bakery that uses SEA SALT, UNREFINED SUGAR, and RAW HONEY among other ingredients. And don’t trust the FDA either.

  4. Henk Ryssemus says:

    As a Carcinoid patient since 1992 I found this article very inspiring. Thank you for sharing you and your family life with us.

    Henk

  5. Vin says:

    You have my sincerest condolences Brett. That was one of the most powerful things I have ever read. It took a lot of courage to write it. Thank you.

  6. Kelly says:

    I read your story as I sit here with my father who was diagnosed with inoperable Stage 4 neuroendocrine cancer in the spring of this year. Your beautiful memoir both terrified and consoled me as I have had no idea what the time remaining may hold for us. Thank you for sharing your story.

  7. Andrea says:

    Brett,
    Thank you for taking precious time and energy to put your heartfelt experiences into words. You’ve introduced me, and many others, to your Dad and he has left quite a legacy. I was diagnosed with Carcinoid cancer in May 2006, at age 45 with two small children. Reading your story has inspired me and answered many questions that I had. Every day is a gift.
    Blessing and peace to you and your family.

  8. Sue says:

    Brett, Thank you so much for telling us the story of your Dad. Also, all that he went through to stay around for you and your family. He would be very proud of you for sharing his story and live with the world. God Bless you and your family this holiday season.

  9. Bilal says:

    I’m sorry for you loss,Brett. You truly did honor to your father’s memory and more importantly shared your love for him with others. May his memory live on through your words. God Bless brother.

  10. Thank you for writing this Brett, for sharing the story of your Dad’s fight with Carcinoid cancer and your experiences as a caregiver. Your fine writing really brings out the human drama and I’m glad you didn’t dwell so much on the clinical details.

    I am a Carcinoid cancer patient too, and I’m always in awe at the amount of energy and love that caregivers bring to this shared battle. As you noted, it can last more than a decade. The caregivers don’t really get a lot of credit and your story highlights the emotional challenge and other burdons (eg- deciding to become a living donor) that weigh on caregivers.

    Though I live in Singapore, I grew up in California. With my 3 brothers and my parents we have enjoyed a *lot* of camping. For me the most poignant image in your story is of the Rockies fading in the rear-view mirror. Powerful stuff, and well expressed.

  11. Diane says:

    Brett, what wonderful writing! Your love and admiration for you father radiated for all to read. Having a loved one die from Cancer is not pleasant. Through your words, many will now be including you and the rest of your family in thoughts and prayers.
    A Daily Listener

  12. Kurt says:

    Brett, Jen passed the link on to me. Know you and your family have been in my thoughts and prayers over the last several weeks. I deeply appreciate you well thought words about your dad and recognize so much of who you were and who you have become in them. Peace, A-B – KC

  13. Jeff's Dad says:

    Brett,

    Just got the opportunity to read your “Dedication” to Warren. I know he was proud of you and would have appreciated what you wrote about him. I had heard a lot of what you wrote about as his illness went along so held it together pretty well until the last.

    My father suffered a ruptured brain aneurysm at 2:00 AM in May of 1996. He lay in a coma for about 12 hours. I think he also fought and held on as long as he could until his family from a few hundred miles away could meet around him one last time. When the last arrived I could see that he was still fighting it. It became my job to do what your mother had to do; I had to tell Dad that everyone had made it safely and it was “okay for him to go”. Shortly after that he breathed his last.

    My one big regret is that I hadn’t seen my Dad in a while and one day had been on a business trip that took me through Tulsa on the way home. I thought about stopping to see him, but didn’t do it. I thought he would always be there and I was tired and wanted to get home. That was two weeks before he died.

    It is very hard to turn loose of the ones you love, but sooner or later it has to be done. I share your loss. God bless you and tell your mother and brothers I send my sympthies. I’m sorry I couldn’t make it to the furneral.

  14. Fr. Rex says:

    What a wonderful senitment for your father and mother. It insipres me in many differnt ways. I pray God will heal the hole in your heart.

    Blessings upon you and your family,

    Fr. Rex

  15. Kathy Gillette says:

    Hello-Thank you soo much for sharing your family’s experience with me.I’m so sorry to hear about your Dad.I am so sorry for your loss.Reading your story here has again brought tears to my eyes as I remember my father’s fight to stay alive and strong for more years than I can remember.I still have a difficult time and miss him dearly, though it has been a little over five years since he passed.I especially have a difficult time during the anniversary of his death.It is very near to my daughter’s birthday and she has a tremendously difficult time also as she was extremely close to my father.I want to let you know that it does get easier, but the pain is always there.It does numb to an extent, but it still hurts.In a way, I’m glad that the pain is there so that I don’t forget my father, not that I ever could.Your story was beautiful and very similar to mine, though my father’s death was for different reasons.He also hung on for the family and didn’t let go until I told him that we were alright and it was time to let go.Thanks for sharing and if you’d like to write, please feel free.

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