Beloved Father Succumbs to Rare Disease

It was over pizza my dad told us he was dying.  I hope he forgave me for doing so, but I walked right out the front door.  The July Texas heat was less suffocating than a living room full of five grieving family members:  my dad now faced with a devastating diagnosis, my sister and I faced with the loss of our father, my mother the loss of her husband, and my grandparents their only child.

The diagnosis-- meylodysplastic syndrome-- considered a cancer of the bone marrow that alters the structure of the blood cells it produces, often leading to a leukemia that is notoriously unresponsive to treatment.  A bone marrow transplant is an option for some with the disease, but due to multiple health issues and the severity of the illness, this was out of the question.  

Mom and Dad After 30 Years of Marriage

A google search revealed the same disease was responsible for the deaths of children’s author Roald Dahl (Charlie and the Chocolate Factory), as well as screenwriter and author Nora Ephron (Sleepless in Seattle, You’ve Got Mail).  Meylodysplastic Syndrome was also the reason breast cancer survivor and ABC journalist Robin Roberts announced her need for a bone marrow transplant in 2012.  Even with chemo, my dad was given an eight month prognosis.  At 56, he wouldn’t see his 57th birthday.  A month before his diagnosis, my parents celebrated their 33rd wedding anniversary.  There would not be a 34th.

Any denial I experienced was more of a wish that we could live in world where my dad was not sick at all.  A world where he could have lived a full life and been a rockstar at anything he chose to do.  As long as we were in this reality, the announcement of his diagnosis struck me so hard because everything in me told me our time really was limited.

Still, the hope beyond all hope that this day never happened still loomed, and it was quickly squelched.  Evidence was now everywhere I turned.  The very announcement of his diagnosis had to be written down and passed around through all of us because Dad could no longer breathe well enough to give a long explanation.  Two weeks after his announcement, he landed himself in the hospital with an infection, uncontrollable swelling in his legs, and fluid collection around his heart-- all evidence of the stress his body was under while attempting to function.  Over the next eight weeks, he would be hospitalized five times, each for more than a week.  He seemed to cycle from half way healthy to critically ill and back again.  Two months after his diagnosis, he was gone.

Like most deaths from cancer, this was the end of a series of events that began many years before. The only difference was the original culprit was not cancer but a weakened immune system.  Every few years, a bout of pneumonia would send him to the hospital and take weeks for him to recover from.  In 2011, he was diagnosed with microscopic polyangiitis, a disease that alters the structure and number of small red blood cells.  This disease can attack any organ-- most commonly, the lungs, skin, and kidneys.  With Dad, it attacked the lungs, and continued to do so until the time of his death.

This disease had a high death rate, had been known to throw the healthiest of people into the need of dialysis overnight.  The accepted treatment in order to keep the disease from progressing was steroids and chemotherapy.  He was fortunate to carry out a year and a half of chemotherapy with little side effects and it appeared the autoimmune disease went into remission.

In January of 2014, a sinus infection hung around and turned into pneumonia.  By May, he was in the hospital for three weeks straight, we later found because the chemo had affected his bone marrow-- the central part of the immune system.  In short, what we all thought was going to give him life, took his life.

Two months after Dad announced he had cancer, I received a call from him.  He’d been taken to the hospital by ambulance.  Even with an oxygen mask, he was gasping for air, barely able to talk.  Somehow he managed to relay to me that he was in liver and renal failure.  I made calls to family and then jumped in my car and made the 60 mile drive home.

Dad was able to spare us the pain of making decisions for him; he let the hospital staff members know of his decision to stop all medical treatment and be moved to the hospital’s in-patient hospice facility. All of us received wonderful care from the hospital and hospice staff members.  

Last Picture Taken of Dad

A day after he was transferred into the hospice unit at the hospital, Dad slipped into an incoherent state.  He would wake up every few hours, delirious and in need of pain medication, and then go right back to sleep.   I spent plenty of time holding his hand and talking to him. The room was freezing, and we kept it that way just like he liked it at home, hoping that he would wake up and be himself for just a few minutes more. Time seemed to stop as my sister, my grandparents, and many family members and friends wandered in and out of his room. My sister and I stayed in his room with him and for days, time seemed to stop, like we could live indefinitely on hospital coffee and showers.  But my prayers and hopes that he would wake up were not meant to be.  After a nurse came in and announced Dad’s vital signs were barely there at all, I had no choice but to accept reality.  I finally turned up the thermostat in the room and began looking into arrangements for cremation and a memorial service.  Dad passed away in what appeared to be a peaceful manner in his sleep early on a Saturday morning.  There in that room with him at the end of his life was about as close to God as I’ve ever felt.

Written By:  Amanda Bower
SCwSG Writing and Blogging Specialist