How a 3-year-old saved my life

On May 9th, 2008, I discovered my son Liam Patrick McNassar had Acute Lymphoblastic Leukemia.  He was 3 years, 9 months old and he was an amazing boy.  My wife, Lisette, I and our daughter Sophia were shaken, shaken to our core and in the midst of it all, a small boy, brave and fierce, withstood great pain, great adversity and brought us close to one another in a way we couldn't imagine.  Much of Liam's treatment and remission and relapse and the end game is a blur to me.  Some of this stems from the fact that my role for the first part of Liam's illness was stabilizer.  Lisette and Liam were on the front lines, going to outpatient care, interacting with the doctors, facing the firing squad.  I had to work, keep up the insurance, provide in my own way, my small way.  Sophia was safely in the arms of Ti and Fuffet much of the time, buffered from the scariest aspects of Liam's illness, but also detached from our unit, our multi-front offensive against the silent glacial killer that enveloped all of us and slowly choked us out.  I went to work each day, caring less each day about what I was doing and where I was, my work suffered, my performance was poor.  The true performance was the illusion that I was anywhere but in the hospital room where my son lay, fighting for his life.  Fortunately (for I find this to have been the greatest of blessings should such a thing actually exist) I was laid off from work.  This was construction in 2008.  In retrospect, everybody was losing their jobs.  There was really no place for a carpenter that had no focus, no attention to detail and no will to be present in his work.  I stayed in the hospital with Liam and Lisette, as we transferred to Doernbecher in anticipation of a bone marrow transplant.  It was perhaps the most taut period of Liam's treatment.  We were at a loss.  There was no bone marrow donor to be found that was a close enough match to satisfy the doctor.  We went into full swing, calling on all of our resources.  There were bone marrow donor drives. one at Ethos where my sister-in-law Michelle worked and another at the University of Portland.  It was actually quite epic, the turnout was so huge that the Red Cross agreed to start collecting bone marrow donors in Portland again.  At that point, I had to drive to Vancouver with a group of friends to register on the donor registry.  My recollection of this period may appear to you from this recounting to be spotty or confusing, I tell you, that is an understatement.  A constant cascade of worry, followed by rage, followed by fear and then grief as we lost friends around us (Natchie, Darian, Ben, the many, many others...) and then the cycle began again.  So it was that we finally, after a couple months and several searches of the national bone marrow donor registry found a donor, we didn't know who or from where (as it turned out he was German [Wunderbar])  We jumped on it.  It required a seriously taxing round of full body radiation for Liam, a dark and macabre series of treatments that were tempered mostly by the fact that we met a great friend and fan in Dr. Dan Robinson.  His compassion and love for Liam, as he shared his grief with us over the recent loss of his own son was both moving and calming.  We pressed on and Liam received his cells.  We went home a while afterward, hopeful, peaceful and joyful.  That was a quiet winter of content, 2008.  we were snowed in that winter in out little townhouse condo in Murrayhill.  We hunkered down and had such a wonderful Christmas.  I felt like Bob Cratchit, not a penny in my pocket, but the wealthiest in love, thankfulness and happiness.  We were so relieved.  Liam's hair was growing back and he felt great.  Sophia was with us and we were good.  January passed and it came time for Liam's CBC and transplant review.  Liam was feeling strange and he was really wooried one night, telling Lisette that he felt something was wrong in his body and that the new bone marrow cells "didn't want to be friends anymore."
  When we were sitting there in the room with Curry, Lamkin and Glover...three doctors, dour  and grim, telling us that the battle, hard fought was over and we were not on the winning side, I felt it bubbling up inside of me.  I had been able to stave it off, slaked by hope and fatigue and fits of joy from small triumphs.  But there it lay, naked and freshly wounded.  I was staring at the mortality of my son.  I was staring at it as I had for so long done, but this time, there was no hope, no plan, no exit strategy.  There was only inevitability.  There was a period, a punctuation mark on the end of my son's existence.  It had been written and now we were playing a game of how long can we draw it out.  For weeks we had transfusions and life saving measures that he suffered without argument or complaint.  Liam, by this point had become accustomed to discomfort and fearless acceptance of his fate.  The grace that boy showed daily still haunts me.  I think of the sacrifices, the small deaths that boy suffered in a thousand ways on his road to oblivion that most of us would have been unwilling or unable to do.  It still amazes me.  We were supposed to take Liam in on Tuesday.  We had decided a few days before that the transfusions were too taxing.  His blood was thickening and sludging up in his veins.  The end was close.  It was a good thing that we had cancelled the transfusion, because he wasn't going anywhere.  He really couldn't eat anything and we had ten different cups with different assorted drinks, juice, milk, water, chocolate, etc that he tried sipping from.  Everything tasted like ash on his tongue.  The family gathered and as night fell, one by one they parted, going home and waiting in their own ways.  I stayed close by, watching, feeling it close.  I picked up a pencil and started writing. At first it was a few thoughts.  Soon it became a speech, words to share that were a reflection on th elife and passing of my son.  I referenced the death of my father and the death of my niece Rebecca.  I mused on how those two experiences, so close to the tragedy awaiting us, had prepared me in some way for this.  I wrote, reflected and summarized.  I thought a little more and concluded.  As I lay down my pencil, Liam drew a strained breath and his mother kissed his brow.  Michelita slept upstairs and Sophia was in a sleepingbag nearby on the floor. A few more minutes passed by and Liam started talking to his mother.  He cried out and told us that he saw the train and that he was on it.  Then Liam breathed his last, laying back into his mother's arms.  I stared for a moment, terrorized, realizing that this was the last time we (the 4 of us) would be complete.  I called the hospice nurse and he came, confirming that our child had left us forever.
  The aftermath of this was darker and more vexing than the 13 months we had spent staring cancer and a child's mortality in the face.  I was done.  We drifted through Liam's celebration of life, an epic event, attended by hundreds of people that were deeply affected by the life and loss of our child.  I was moved by the turn out.  I learned the hardest part of losing a child is the fact that you spend more time consoling others than you do being consoled.  Liam's loss was so overwhelming that people would approach us in a mess of tears and emotion, looking to us for some support.  It was utterly draining.  In fact, at the end of the month I was drained, devoid of everything, joy, happiness, sadness, pain, tears, will.  I was at a tipping point.  I thought to myself, "how do I do this?"  How could I fill this void?  I could drink, I could find drugs, I had started smoking again (secretly) and was on the undefined path to self-destruction.  I had lost my son, my legacy, my creation.  If there was a God and he had created a man and a woman and made in them perfection, only to see them fall and become maggots, fraught with petty fallacies and original sin, his sense of loss at the spoiling of his great opus was but a speck of dust compared to the universal oblivion in which I was now lost.  I needed a tether, a life line.  I need a cause, a reason to remain.  I felt myself and my will to remain myself slipping away.  Grasping, like a frightened animal, searching for sure footing as a riverbank crumbles underfoot and a raging flood prepares to sweep you away, I looked frantically around, at my life, at my home which was being taken away from under our feet by the bank, at my wife, likewise overwhelmed in her grief that I couldn't save her let alone demand she save me, at my friends, the people I have known and loved for so long but cannot speak with as equals since we no longer are, at my family, that have moved on, at my son that will never change, forever a child, never to grow, never to love a woman, never to sin, never to disappoint us, never to prove his human frailty in any manner other than his mortality.  Then there she was, a little girl, three years old, tiny, a china doll haircut and more lost than I.  I remembered that I had a made a tacit promise to her once, to never leave her behind, to remember, to keep her and protect her.  Sophia was here.  I would get lost at times in the cycle of grief and blame and rage at the absence of Liam, but Sophia was here, looking for love, looking for answers, looking for peace and reassurance.  She had suffered a loss that was impossible for me to understand.  She had a brother, closer to her than perhaps anyone else.  Lisette and I were her parents (gods to her in a sense) but Liam was her equal, her life line in life.  They traversed early life together.  He guided her, giving her gentle nudges, reassuring hints in the right direction.  She relied on him for assurance that these grown-ups weren't crazy or just making this stuff up as they went along.  Liam gave Sophia a frame of reference and was fluent in her language.  Sophia was very quiet and needed a patience and understanding that Liam had in abundance.  It struck me then that Sophia's loss was unique and acute.  It was not something she'd be able to explain to us or probably even be able to identify herself.  The fact was that she was crippled by Liam's death in a way that nobody could remedy.  I had lost Liam, but there was no way in hell (if there was such a place) that I was going to lose Sophia.  In that instant, I realized that drinking or heroin, or fast cars, or defiling myself in 1001 ways was not going to cut it.  I needed to live.  I needed to rebuild, I needed to be present, supportive and whole.  It was because of a three-year-old that I decided to live and because of her that I am here today.  I am just certain of it.