The Courage to Survive

Temper us in fire, and we grow stronger. When we suffer, we survive. ― Cassandra Clare, City of Heavenly Fire

It’s an odd feeling, this state of calm and peace, of settling into a life of relative normalcy. For the first time in months I am not constantly worrying about fevers or chemo side effects, I am not reviewing a treatment roadmap and trying to prepare for the next phase, and I am not living in a persistent state of fear over what tomorrow holds.

Hazel dashes by me at full speed, running barefoot through the hall of her grandparents’ home chasing a cousin into the next room. I hear a loud crash and jump up with a start, but then hear an eruption of intense, infectious laughter that I know to be Hazel’s. All is good, she is safe. She waddles into the hallway, still laughing, cheeks a rosy red hue, her blue eyes barely visible as she grins hard, crinkling her face into a soft pastry that swallows her cheekbones, her gumdrop nose wiggling with every giggle. The most striking difference in Hazel’s current appearance is her hair. After having spent months with nothing more than a few strands of wiry red hair left on her otherwise completely naked scalp, she now has a gorgeous covering of down-like fuzz growing thick and glorious atop her head. It is the most beautiful and amazing thing I have ever seen. Her hair is golden-auburn, approaching half an inch in length, and is as soft as the down from an angel’s wing. Hazel’s eyelashes have also returned, showing up tricolor at first with a deep red base, black middle section, and tipped in whitish-blond, now giving way to luscious red lashes that shoot out nearly an inch from her face. Her red eyebrows have also grown back in, thin and wispy, as if painted on by the tiny paintbrushes of fairies as she slept.

Even as I listen to the sounds of cousins playing, enjoying the smells of dinner wafting in from the kitchen and basking in the light of the reality of our new day, I am reserved. If I close my eyes I can still put myself in the hospital. I can smell the antiseptic used to clean dressings, my nostrils burn from the bleach used to clean the floors, my ears perk at the beep of monitors, and I see the bright, white lights beaming from overhead. These visions are vivid, born from experience, and seared into my memory by repetition. Over the past 10 months we have endured more than I could have ever imagined, spending weeks in the hospital, bringing poisons disguised as medicine into our home, and watching as our baby has undergone countless rounds of anesthesia, chemo, and operations. I have witnessed Hazel be intubated, have a medical device placed in her chest, and seen the long, steel needles used to puncture her spine and her hip. My memories haunt me, and yet my heart hurts worse because I know for all of the intense details of my thoughts, Hazel’s are a hundred times more awful.

I stand in the hallway basking in the beauty of this tiny person staring up at me, thinking back on 2017. Having never been in the armed forces, I can only speculate that the feelings I have looking back on our year fighting cancer approach those of a soldier having returned from a wartime deployment. I know the experiences are not the same, but soldiers as well as my family have witnessed life-changing, horrific events that will shape the rest of their lives. We have “gone through something”, traversing a valley that no one wants to travel, and now, as we begin to emerge on the other side, our glimpses of this new life do little more than remind us of what once was and can never be again.

I cannot “undo” cancer, I cannot take it away from my family and neither can anyone else. We have seen this thing, this disease, firsthand. We have lived with it and fought tooth-and-nail to remove it from our life, but the lessons we learned along the way will remain. We have spent 10 months on high-alert, constantly afraid of what comes next or what COULD come next, and now as we approach the relative tranquility of Maintenance Phase I don’t really know how to feel. I mean obviously I feel happiness and relief wash over me in waves, yet there is a residue of uneasiness that taints every good experience that I now have. Given the wide breadth of iterations that Post Traumatic Stress Disorder can take, some experts may say I am experiencing the effects of mild PTSD. I honestly couldn’t tell you what I’m experiencing. I can only sum it up by saying, our family has seen some unpleasant things in the past 10 months and those experiences will manifest themselves in our everyday life for a very long time.

I have walked a path that was specifically designed for me, for Hazel, and for my family. Some days I led our family on that path and other times I was led by them. Many times we stumbled along together, shoulder to shoulder, trying to protect the one that was dear to our hearts but in the most danger. Our journey is not over by any means. We still have 18 months of hospital visits, at-home chemo, blood tests, waiting, and watching. The hope is that Hazel will charge along this path, relearning how to be a little girl again, forgetting much of what has become routine in her life up to now.

Everyone says Maintenance Phase is when your life becomes more normal again, but what does that even mean? What is normal? I don’t know how to act; almost don’t know how to feel about our life now. My family was attacked and is still dealing with the aftermath of that attack. We cannot just act like nothing has happened when SO MUCH has happened. There is no reason to commemorate the sadness of the past year by constantly reliving those experiences, but when I close my eyes, I see it all; I relive it all over again.

Someday I am sure the memories will fade, or at least I pray they fade. I wish for them to dissipate like smoke, dissolving painlessly into the blackest depths of my mind, never to be rekindled again. Until that day comes, I can handle my memories of this time spent with cancer. I can understand what we have been through and how it has changed our life. I can use the lessons it has taught me to be strong and to use the love I have witnessed to provide a safe harbor for my family against the evils of this world. I may not be the same person as I once was, but for better or for worse, I am still a father to my children and a husband to my wife. Hazel is still here and we have weathered a storm the strength of which I have never seen before. As my family continues to progress in this journey, I don’t know what else to do but stay the course. I am settled in and ready. Somehow we have managed, somehow we have survived.

“I have fought the good fight, I have finished the race, I have kept the faith.” – 2 Timothy 4:7  

New Year’s Blessings

“There are things known and there are things unknown, and in between are the doors of perception.” ― Aldous Huxley

The tan vinyl bottom of the faux leather chair squeaked awkwardly as I readjusted my position, my elbows digging into the hard, covered armrests. The chair wasn’t uncomfortable, but it wasn’t exactly comfortable either – existing as a piece of furniture that you wouldn’t choose to sit in unless given no other choice. That was fitting considering it was in the lobby area of the eleventh-floor chemotherapy clinic at Nationwide Children’s Hospital. No one chooses to be here, no one draws comfort from sitting in these oversized upholstered chairs or the crisp, squarish couches in the middle of the room. We are here because we must be, because it’s the only way, our only hope.

Hazel sat on a single piece wooden chair playing quietly at a kid-sized table on one side of the room. She had two cars and was making them a “mommy car” and a “daddy car”, talking to one another and driving into a small plastic garage she had found on one of the toy shelves in the corner. I looked around the brightly painted room and saw my past, present, and future displayed in haunting detail on the faces of the other families in the lobby waiting for their names to be called. We were surrounded by families that had recently been diagnosed, were partway through treatment, or were nearing the end of their years-long struggle.

Farthest away from me, in a corner all by themselves sat a trio of mother, father, and son. You could tell they had not been at this long, perhaps this was even their first time. The son was twelve, maybe thirteen, he had dark brown hair and wore a bright yellow paper mask over his face. He had on black track pants and an orange shirt that was emblazoned with a short phrase about strength and a web address, no doubt landing on a page that told about the boy’s struggle with cancer. His parents – both looked in their late 40’s, but given their circumstances, they could’ve been much younger – each wore the same shirt, track pants, and mask. The mother carried a light purple backpack equipped with a small bottle of Purell hand sanitizer hanging from one of the zippers. She looked timid, nervous, and somewhat scared, jumping up each time one of the nurses walked into the lobby, only to slowly sit back down as someone else’s name was called. The father had salt and pepper hair and carried a brown computer bag. His demeanor was calm, but uncertain, as he glanced around the room surveying the other patients and their parents. He ran his hand along the mother’s back, squeezing her shoulders and visibly comforting her as they waited for their son to begin the most important struggle of his life.

I couldn’t tell you that man’s name, but I knew him. I knew that his calm outer demeanor was only a façade, an invisible armor that merely kept his darkest inner fears and worries at bay. He was only strong because he had to be, standing as the impervious leader of his small band of adventurers as they traveled along this twisty, precarious path set before them. He was the protector, the organizer, and the fixer. I knew that man because he was me, nine months ago, sitting in this very room, wondering how I was going to make it to tomorrow, let alone a year into the future. I didn’t need to know him or his family to know the fears that ran through his mind, the worries that kept him up at night, or the concerns that he likely had written down on a yellow notepad housed in his computer bag that he always had with him.

I knew the mother, too. I knew she was the comforter and that her backpack likely was filled with several types of disinfectants, snacks, and games to keep her and her son occupied as they waited for his chemo to finish. I knew that she was over-prepared, constantly concerned, and exceptionally protective of her son. This experience had broken her, shattered her feeling of security, and taken away her certainty. She was afraid and constantly on the lookout for anything that could harm her child. Since diagnosis she had probably not slept more than a few hours at a time. Several times a night, she could be found in her son’s doorway, staring intently at his sleeping form as she checked to be sure he was still breathing.  

I remembered those days, the early days of diagnosis and treatment. The constant fretting and worry over side effects, germs, and even the smallest of cuts or bruises. We only started our battle nine months ago, but it felt like an eternity. We were older and wiser now, equipped with the knowledge of experience, but still new enough in our journey to remember life prior to cancer. We were still able to remember the happiness and naivety of our former selves, worried about invisible problems that had simple, clear cut answers. How I wished to go back to those days, to return to the time before I knew how to calculate an ANC or what color methotrexate was and what side effects it caused. We can never go back, never undo what cancer has done to us and to Hazel.

I could smell my coffee sitting next to me on the end table, the wisps of steamy aroma tickling my nose as I took a sip. I looked over my shoulder and Hazel was now laying on her back on the carpet, holding her iPad above her face watching some kiddy show on YouTube. Her legs were crossed and she softly tapped her foot to the beat of the song as she laid in perfect contentment. “Jeremy” the nurse called and the track pants-orange shirt trio stood up in unison and hurriedly walked over to her. As I watched them get ushered back for treatment, I silently asked God to give them strength in the coming months as I knew they were going to need it.

In the same moment that Jeremy and his parents were leaving, a woman and her 15-year old daughter were just arriving. The woman had short, dark hair and pushed a cart filled with a myriad of bags and clothes. The daughter, Sara, dallied along behind her mother and wore a purple bandana tied tightly around her head. Her earbuds led to an iPod she carried in her hand which apparently was playing some sort of rap song. She bobbed her head and sang the verses – some of which were fairly vulgar – in a loud, monotonic voice as her mother checked them in at the front desk. She maintained a thousand-yard stare as the front desk administrator placed a thin plastic wristband on her arm and handed her mother additional scheduling paperwork. As they were seated next to us in the lobby, the girl went back to singing her rap lyrics and bobbing her head, acting as if none of the rest of us were even on the same planet as she was, let alone within the same room.

The mother and daughter looked…weathered. We had seen them many times over the past months as many of their chemo days had lined up with ours. In all that time, I had never seen the girl smile or even crack a grin. I realize that we were only seeing her once or twice a week at a place that she likely had grown to loathe, but still, it takes some resolve to not smile at least once out of courtesy to those helping you. As I had observed the girl and her mom over the past several months, I had gathered they had been at this for awhile. The girl had no hair and often wore sweatpants and a coat or blanket, even during the summer months. She had dark skin, but it was pasty and kind of puffy, making the color unlikely the result of a tan and more likely the result of hyperpigmentation from chemotherapy and radiation treatments. She never interacted with anyone directly and never spoke, except to sing her rap lyrics. I got the sense that this was a form of protection she had created for herself. She hated the clinic so much that she used her iPod to transport her to some other place and time, far away from the pain an anguish of cancer treatment.

The mother smiled often, but it was almost always an apologetic smile to the people around her. Her daughter’s singing wasn’t awful, but it certainly disrupted the otherwise quiet atmosphere of the clinic lobby. She never tried to stop her daughter from singing and I assumed this was because it was a battle that was long ago lost and not worth the effort now. None of the rest of us ever said anything to her either. We understood that all of our children deal with this experience in different ways, and if hers was angry rap lyrics, that was fine by us.

I felt for this mother-daughter combo. I knew their journey had to have been so much longer and more arduous than ours, but they continued to persevere. They were not filled with the nervous energy of newly-diagnosed visitors, instead portraying a dramatic heaviness that was instantly recognizable. Their struggle had hardened them, built a resolve that none of us could even begin to imagine. Their faces told the story of thousands of chemo treatments, unknown side effects, and an ongoing struggle that directed every aspect of their lives. A deep emptiness was present in their eyes, the kind of emptiness that only comes from being worn down over years of soul-sapping struggle. I could tell that this mother and daughter had witnessed enough of cancer’s life-crushing destruction that they were no longer afraid, for there was nothing left for them to fear.

My family is not at the same point in our journey as Jeremy’s or Sara’s families, but we are sharing our experiences along the way with them, living, learning, and growing together. I can say without a doubt that 2017 has been the toughest year of my life, filled with heartache, despair, and tragedy. Within the past twelve months, I have both lost and found myself, I have been forced to explore the darkest recesses of my mind, and have felt my heart break over and over again. I have watched as my youngest, most vulnerable daughter has endured countless operations, suffered numerous side effects, and struggled to regain her strength after increasingly devastating chemotherapy. I have seen my family torn apart as we grappled with our new reality, changing nearly every aspect of our lives to accommodate Hazel’s needs during each phase of her treatment. I look back and I see austerity and dismay throughout 2017, and yet I know there have been bright spots as well.

Our family has been embraced with incredible love in 2017, by our church family, our friends, and by complete strangers. Through this experience my children have met Christ and learned to rely on their faith in the toughest of times, I have rekindled a lifetime relationship with my Savior that is stronger now than ever, and my family has seen the impact of focused, continuous prayer. I would have never asked for the experiences we shared in 2017, but I know that because of them we have grown into a strong pillar of faith and fortitude. For that I am thankful and I rejoice in what the Lord has provided for us.

My 2017 did not start off well, but yesterday on December 31, 2017, at 10:15am I was honored to baptize Paul, my eldest son, in front of a crowd of our closest family and friends. Hazel was also in attendance and squealed with glee as her brother chose to put his faith at the forefront of his life. I can think of no better ending to such a tumultuous year.

In closing, I would like to quote my son, Paul, as he answered the questions of our Pastor during his baptismal confessional yesterday. When asked why he chose to follow Jesus he said, “I want to listen to and obey God. I want to squeeze Him and Jesus into my heart so I have no more sins.”

I can only hope that as we enter into 2018, that I am able to maintain a child-like faith, squeezing God into my heart and pushing all of the pain out. I pray for God’s blessings to continue in such tangible and forthright ways as they did in 2017.

Happy New Year! We wish you innumerable blessings for 2018!

“So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” – Isaiah 41:10