Defying the Odds Beyond Death
As Noah sits in the chemo chair receiving the toxic chemicals that give him searing headaches and make him vomit all day, I hear a small quavering sound from the hallway. It floats through the crack of our door like the unpleasant aroma of someone else’s lunch – one that is difficult to encounter without retching. My son and I sit, trapped by the sterile walls of the children’s hospital; he has relapsed for the first time.
“Am I going to die of cancer?" asks a young, fearful voice.
As if in a dream - more like a nightmare - some part of me registers Noah’s doctor responding in his measured but compassionate manner, “That’s a big question, James. Let’s go into my office and we can talk about it with your mom.”
The sound of a door closing resonates acutely within me as something deep inside shuts as well. I have been holding my breath, heart pounding wildly, awaiting the doctor’s response; terrified to look in Noah’s direction. Did he hear this exchange? Pain courses through my body for this young boy, my child and all the children on the Oncology floor who are faced with the probabilities of death every single day.
I surreptitiously flash a glance at my son; he is pale and waxy from the chemotherapy, his earbuds secure as he dozes in and out of awareness, comforted by his playlist.
He hasn’t heard. My breath escapes in a quivering sigh. Noah has never asked me that question.
Oh, my God, what will I say if he does?
Months later, I embrace my thirteen year old son as he asks his doctor this same searing, unfathomable question. With tears mercilessly streaming down my face, the air is sucked from my healthy lungs – lungs I wish I could transplant to my son as the cancer ravages his, drowning us both in tortured silence – as the doctor explains that Noah’s treatment is no longer working.
The answer is yes.
There is nothing left to say.
We have run out of options.
My son will die and both he and I are fully cognizant of the horror of what lays ahead.
A Door Slams Shut
The cancer is unstoppable.
The cure elusive.
Those with recurrent Ewing sarcoma reside in the realm of st@tist!cal insignificance. They are the forgotten ones, lost in the brutal reality of archaic treatments and lack of financial viability in funding research for cures. Why would pharmacy or society fund a cure for a disease that only occurs in one in 500,000 people?
“Because the loss of a child extends far beyond the financial burden of a cure: it creates psychological and sociological ramifications for family, friends and community. Such devastating impact is impossible to measure,” answers my heart in despair.
My st@tist!cal insignificance was named Noah and he was a bright, remarkable young man with passion, determination, a tremendous love of life and will to live.
Just for the record, he wasn’t st@tist!cally insignificant to me. My heart did the math and came up with radically different results: Noah was my world, my son - the very essence of my cells. A priceless part of me died with him, never to be recovered by mathematical probabil!ties and st@tist!cs.
Back in 2012, after Noah’s initial diagnosis, I became obsessed with unearthing evidence of children who had beaten the odds – the outliers. I first read about John, Haley and Mark during the long hours, days and months when my son was hospitalized. Reading their stories of perseverance despite the brutality of their illnesses, had given me hope.
A hope that was dashed in rancid oil and ignited in flames as my son died a slow painful death at the tender age of fourteen.
But I continued to follow the stories of these three children during the dark days of loss. Some pull from beyond transfixed me as I watched these little souls survive. Most of my tattered spirit rejoiced in their resilience, their glorious defeat of cancer and other devastating events. But if I am really honest, there was a small corner of my heart that wept in guilty disillusion. Why do some survive and others not? Why my child? Was I being punished? Surely I must be a terrible person if something so tragic could befall my family.
During Noah’s passage with cancer, my soul was seared in the highs and lows of extreme emotions. In the end, there was a feeling of crushing defeat and a deep void; my worst fears had come true. Life was filled with a profound searing pain and sadness at the loss of my son. After years of devoting myself to caring for him during his battle with cancer, I was suddenly stranded, without purpose. Grief and loss catapulted me into the abyss of despair and regret.
Clawing my way back to the light led me on a quest to find meaning in that which was seemingly meaningless. All the tears I had cried, all the mornings I had woken terrified, feeling unable to go on and all the sadness and anxiety I had felt in knowing my child could leave at any time, had led me here. I had known the torment of seeing my child suffer and die a merciless death; crushed in the certainty that I could not bear to live another day without him.
But I did.
My broken heart kept beating and my guilt ridden lungs kept breathing.
How does one find a light in the darkness, some peace in the very depths of despair?
I found it in sharing his story, my story. Inspired by the families of survivors, I knew there was a different tale to be told. In writing about my son and my grief, I found purpose once more. But it was a rocky road: I was euphoric one moment and reliving the trauma of my past, present and future in the next.
Gradually, I found some peace with the fact that my son died while others live. That part of my heart which had been closed off to these young, statist!cally improbable survivors opened and felt deep gratitude for them in sharing their story.
“Please survive and thrive, dear children. Please give hope to so many who have been crushed by suffering.” Noah’s voice echoes mine in the fragile recesses of my pieced together soul.
After almost four years of devastating grief, I am finally in a place to feel the utmost love for these little souls, their families and all they represent: resilience, triumph over death and st@tist!cal significance.
That is until, opening my social media page, I feel the pain of Noah’s terminal diagnosis sear through me once more. My husband glances over and seeing my look of shock, asks in concern, “What is it Dawn?”
“Remember the boy - John? I follow him on social media?” He nods in acknowledgment. “He’s dead, Scott,” my voice wavers in pitch. “He had brain damage and has been struggling lately. He died unexpectedly yesterday from complications resulting from repeated pneumonia.”
“No,” my heart cries in horror. “He is a survivor; he has beaten so many odds and endured so much.”
But in the end, his sweet little body has given up.
His story resonates and lingers; I sit in shock, rocking and weeping for the trauma this family must be feeling. Pain that is oh, so familiar to this heart broken mom; to suffer for years only to lose a child in the end is so very cruel.
But it doesn’t end here.
If only it would end.
A week later, I receive more bad news. Sweet Haley has relapsed with Neuroblastoma and after receiving positive scans only the month prior, she suddenly succumbs to rampant disease. The cancer spreads through her little body like a forest fire, consuming her organs, bone marrow and filling her lungs with watery death.
An image of Noah, struggling to breathe as the cancer consumes his lungs flashes through my awareness. The sound of the oxygen machine gasps and echoes in my tormented mind. I know this horror. My tattered heart crumples – only this time for Noah, John and Haley.
In shock, later that day, I open social media once more and discover that after months of remission, Mark has relapsed for the fourth time with childhood cancer. The weight of the news of these children’s plight crushes the air from my chest. Although I have never met them, their stories have deeply affected me. They have changed my story. They gave me hope during a time when all I perceived was darkness.
The flame in my heart dimmed once more. I have lived the every day life of a precious child fighting cancer and the grueling side effects of treatment - the fear and dread of the beast returning and the trauma when these worst fears come true.
A part of me wishes I had not read this news, that I might remain blissfully ignorant, buffered and sheltered from this bottomless ache.
“But then, who will speak for us Mom?” whispers Noah’s voice deep inside, infinitely resonant. The flame rises as the unrestrained hammering of my heart fans it back to life.
“I will, I will, I will,” it cries, beating loudly, fiercely.
And so I shall, always and forever.
I will always speak for Noah and the other children whose cures have been forgotten. Sometimes love takes us on a journey that we could never imagine, one that is st@tist!cally improbable. But you see, my heart does not speak in mathematical terms. It only recognizes the wisdom of one language – the universal love of a mother for her child.
It is immeasurable, never ending and ever connected.
I'll leave you with the eloquence of one of the greatest mothers of all - mother earth. If pictures are worth a thousand words, then this one must be worth a million. It is a photograph which I took after Noah's death. I call it 'Cloud Kisses'. Whimsical mother cloud kisses her little cloud creature lovingly on the forehead. Rest easy sweet child, mamma loves you.
Dawn Williams BSc | BEd | Reiki Master | Writer
Mother of an Angel #NoahsBlueRibbonBrigade
PS - The names of the children have been changed to preserve their privacy, but this is - sadly - all true.
PPS - due to sp!mmers targeting this blog, the word "St@tist!c" has been modified out of necessity (relentless sp#rt jers#y sp!m)
PPPS - If our story has touched you, please share this blog in support of Childhood Cancer Awareness Month. This September, let's: