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

A Ray of Light

“All the cunning of the devil is exercised in trying to tear us away from the word.”  ― Martin Luther

Christmas is a magical time that fills me with a childlike wonder and heartfelt gratitude for the goodness I see in the world. I love the sweet, minty smell of a fresh cut Spruce tree as it thaws in its base, the mesmerizing crackle of a fire as it burns low in the fireplace, and the soft embrace of a warm blanket as I sit in my favorite chair reading a good book and sipping hot chocolate that’s just a bit too hot. I love Christmas carols, the jingling of bells at all of the store entrances by the Salvation Army, and pretty much any Christmas decoration ever created.

Christmas reminds me that people are inherently decent, that I serve a loving and tremendously powerful God, and that my blessings abound. I have celebrated Christmas 34 times in my life, but this year will be the most important and blessed one to date, because I get to celebrate it with Hazel. As I sat looking out the window of Hazel’s H12 hospital room in April, I couldn’t be sure that Hazel would see her 2017 Christmas. I sat in that room filled with fear; I was afraid of the pain yet to come, afraid of the struggles I knew we were to face, but most of all I was afraid of the unknowns…so many unknowns. My head in my hands, I spent much of those first few days praying, throwing myself at the feet of the Lord because I had no idea what else to do.

I wish I could say that I prayed like a man of God in those early hours, but I didn’t. I didn’t pray for wisdom or for strength. I didn’t pray that I would know what to do when it came time to make tough treatment decisions. I didn’t pray for bravery or steadfastness in the face of adversity. I did not pray as a leader. I prayed like a broken soul. I lamented, I begged, I sobbed, I screamed. All dignity and pride was lost as I tried to understand why this burden was to be laid upon my family. I prayed until my head hit the pillow at night and began praying as soon as I woke in the morning. For the first time in my life, I prayed so much that I never knew when one prayer ended and the next began. During this time, I learned what it meant to “pray without ceasing.”

Prayer has a way of connecting us to the spiritual realm, acting as a meditative conduit that lays our heart bare and refocuses our soul to communicate with God. True prayer is more than simply saying some words that sound like a good, single-sided conversation. Prayer is an intricate dance that allows us to know God like we know ourselves. Prayer is a communion of trust and understanding that leads to a relationship so strong that only one of us has to say anything. If you pray hard and often enough, you stop listening for the answers you want to hear and begin feeling the presence of those God has provided.

Battling cancer has had a dramatic effect on my faith and the faith of my family. Our life may look different now than it did a year ago, but I believe this is exactly where we were meant to be; where we NEED to be. Our journey has taught my children the meaning of benevolence, opened their hearts to unconditional love, and given them a remarkable sense of compassion. It has taught them to rely on their Creator and cultivated in them a deep set faith that cannot be shaken. This journey has done more for them in a single year than I could have hoped to do in a lifetime. Our journey has allowed them to witness Christ at work on earth, to feel His hand in their lives, and through their experiences, to see the face of God.  

But the spiritual realm is not mutually exclusive to good. The path my family treads has brought us closer to God, but in doing so we also drew more attention from the Devil. Over the course of the past year, my family has withstood much heartache, incredible pain, and some very dark emotions, and while I can say we have seen Christ at work this year, I am as confident saying that we have also become intimately acquainted with Lucifer. I have seen him face-to-face, felt his lurking presence in my home, saw him standing over my daughter’s bed, and fought with him openly in public. I have stared directly into his dark, colorless eyes, standing my ground when every fiber of my being told me to run. I have heard his footsteps behind me, felt his breath on my neck as he whispered doubts into my ear, and glimpsed his shadowy figure in the long, cold hospital corridors that have become my daily surroundings.

Satan is a cowardly but cunning adversary, using the experiences of our lives to weaken our faith. His desire is to destroy my family and rip my faith from me using the threats of death and loss of my child. He has waged war on my heart and my armor is worn and damaged, showing signs of the repeated attacks of a strong aggressor. Our journey has been filled with such intense emotion that I feel totally used up, eroded to a shell of a person, totally beaten and diminished. I emerged from the first month standing on unsteady, wobbly legs; still reeling from the devastating news of a cancer diagnosis, yet emboldened by the initial positive results of treatment. As treatment continued, a sweeping darkness has shrouded my family like an approaching thunderstorm, the ugly cracks of lightning a sign of the foreboding danger housed within. The darkness is always on our horizon and is so immense that it threatens to swallow us up at any moment.

Light peeks through that darkness though, rays of hope burning through the murky evil that surrounds us. This Christmas is one of those bright rays. I can’t wait to watch Hazel’s face light up with joy as she opens presents, plays with cousins, sings carols, and enjoys everything about the holiday season for yet another year. She is such a wonderful blessing to all of us, and I am so privileged to be part of her life.

As 2017 draws to a tumultuous close, I look back on our year with sadness, but no regret. I am proud of what my family has become and what Hazel has accomplished. We have withstood many trials that have hardened our resolve and built a testament of faith on which we can forever rely. This experience has taught us many of Satan’s tricks, but also shown us the immeasurable grace of our heavenly Father. Finally, in 2017 we learned that even if we are weak, kneeling allows us to bear incredible burdens.

Merry Christmas from The Millers, and have a blessed 2018!

"I pray that the eyes of your heart may be enlightened in order that you may know the hope to which he has called you, the riches of his glorious inheritance in his holy people, and his incomparably great power for us who believe." – Ephesians 1:18-19

Basil for Hazel Apparel Now on Sale!

We are happy to announce that through a new fundraising partnership with Inspire 111, we now have a full line of Basil for Hazel apparel for sale online! 

Visit this link to buy your Basil for Hazel t-shirts, hoodies, sweatpants, and more! We will be taking new orders through January 31, 2018.

We also have PDF order forms available if you or your organization are interested in helping us spread the word for this fundraiser. Contact Nat Miller or comment below for more information.

A portion of all apparel sales will directly support Basil for Hazel and The Miller family.

If you’d like to order additional items from our other online shops on the Inspire 111 website, please place these orders separately. Then, be sure to include Basil for Hazel in the “Company” field of your shipping information, and we will be happy to donate a portion of your purchase to help Hazel and her family.

Basil for Hazel has been a tremendous blessing to our family over the past year. We are so incredibly thankful for your support. As 2017 comes to a close, we are eyeing the future, and it is bright. Hazel has progressed remarkably well, and while our journey is not yet over, we are hopeful for continued progress in the coming year.

Thank you!

New Beginnings in 2018

We are excited to launch a new chapter for Basil for Hazel in the New Year!

We are expanding the focus of Basil for Hazel to create a robust resource for families and researchers dealing with childhood cancer. Basil for Hazel will continue to support Hazel’s journey, but will expand in focus to provide educational resources and financial support to local families dealing with pediatric cancer, as well as provide funding for ongoing Leukemia research.

Keep an eye out for these amazing changes in the coming months. 

Leading with Love

Time is

Too Slow for those who Wait,

Too Swift for those who Fear,

Too Long for those who Grieve,

Too Short for those who Rejoice;

But for those who Love,

Time is not.

- Henry Van Dyke

I remember the first time I met each of my children in vivid, fantastic detail. Time stood still as I stared at their perfect faces, stroked their soft skin, and thanked God for my blessings. The birth of a child is one of the only miracles I have ever witnessed and it is an unfathomable, earth-shaking experience that is as close to standing in God’s presence as I can describe. It is powerful, mesmerizing, and humbling.

The first time I held Paul, swaddled tight in the hospital-issued baby blanket, he stared at me quietly, no crying, no movement, just a tiny, pink, wrinkly admirer with his perfect little nose and delicate, miniature features that stole my heart. When I met my son, all sounds of the outside world quieted, the bright lights and bustling delivery room faded away, and I stared down through a tunnel at this stunning little person. In that first moment, I knew I had found my purpose. I had clarity and a focused ambition like never before. I was not scared or worried, but calmed and collected. I wanted everything for him; success, love, happiness, the perfect childhood, and experiences that mirrored my own. I knew I would spend the rest of my life trying to make his life better, and somehow, that gave me a tremendous sense of peace.

Watching one of my children deal with cancer has been a crushing experience for me, but I can’t even imagine what it has been like for her grandparents. Not only must they watch Hazel suffer, but they have to witness my family’s agonizing journey first hand. They must stand idly by as the family they have spent their entire lives building reels from the attacks of a disease that cannot be seen or controlled. Our family has felt the sting of cancer before as it has stolen loved ones from us on both the Chamberlain and the Miller side; Grandmas and mothers gone too soon, memories lost, relationships prematurely snuffed out. The pain of these battles lingers, their ugly scars flayed open upon each passing year of time lost. Hazel’s battle has created scars of its own and born on our family a weight that threatens to suffocate the joy meant for this period of our lives.

I was surrounded by great men as a kid; generations of men that led by example and helped shape the ethos that I live by today. Men that worked hard, believed in God, and lived by a strong set of unwavering principles handed down from their fathers before them. I was raised by one of these men, a powerful teacher and a faithful mentor who through his actions taught me how to be a father. I have more than three decades of loving guidance from a man who has been through much more of life than I, and yet even he has not dealt with what I currently face.

Childhood cancer has forced me into a role I was never aware existed; one in which I not only worry about my own family, but feel responsible for my parents, in-laws, sisters, niece and nephews as well. I struggle to keep cancer out of their lives, to protect them from the destruction that I see up close and personal every day. I provide as much information as I can, while ensuring them of Hazel’s safety, even at times when the demons of doubt and worry claw at me internally. In a situation that can offer no solace, I try to act as a human shield; buffering the blows of news I know will be difficult to bear.  

Much of our everyday life is focused on managing Hazel’s side effects, attending doctor’s visits, and administering medications. We are constantly researching and monitoring her condition, watching for the telltale signs of relapse or of additional, dangerous effects of the medications that are relentlessly pumped into her body. Elizabeth and I often feel consumed in the process, with barely enough time to breathe, let alone try to raise our family based on the principles we were taught growing up. We forever worry that important life lessons are being missed, our duties as mother and father forgotten as our life is chewed up by the responsibility of keeping one of our children healthy. We fear our plight will affect relationships with cousins or prevent our parents from doing the things they had planned for this stage of their lives. We grow concerned with each passing day that others’ concerns for us will draw attention away from the glorious blessings of new jobs, new babies, holiday celebrations, or other important accomplishments.

How can we build a family that lives up to our parents’ example when all we can do is survive the onslaught of each day’s problems? How do we choose which of our kids deserve more of our time when one of them has a life-threatening disease? How do we make all our children feel safe and grounded when our life is messy and filled with constant uncertainty? I don’t know, but I am trying to figure it out.

We have four beautiful, intelligent children with cousins that long to be with them, family that showers them with attention, and friends that beg to be part of their lives at every turn. They are so blessed, but growing up so fast that I’m afraid Elizabeth and I are missing it. I want my children to be resilient, focused, courteous, and to love life. I want their hearts to soar and to be filled with compassion. I want them to be mindful, calculating, and courageous. I want them to be who they are, unapologetically and joyously. Most of all, I want them to know my love for them and to feel God’s hand in their lives.

My dad taught me many valuable lessons over the years: live with character in the face of adversity, make sacrifices for your family, and build a foundation of faith to withstand even the strongest storms. But there is one lesson he taught me that stands out above all others: A family that is built on love can withstand anything.

“Let all that you do be done in love.” – 1 Cor. 16:14

The Ultimate Betrayal

My breath felt hot against my face inside the disposable mask, which heaved out as each exhale attempted to escape the wet, wafery barrier into the surrounding air. I sucked in a long inhale and let out a sigh, trying to calm the jittery uprising in my stomach as I stared down at the clear syringe with its precise hashed markings. The glass cylindrical tube was filled with four milliliters of thick, clear liquid and tipped with a gleaming, stainless steel needle about an inch long and sharpened to a dangerous-looking angled point. The benign-looking contents of that syringe both terrified and fascinated me. It was filled with cytarabine, an antimetabolic agent that has been widely used to treat a variety of blood cancers and viral diseases since the early 1960’s. Simple in principle, but decisive in its action, cytarabine is similar to certain chemicals found in the human cell, which allows it to readily be incorporated into human DNA. Once in the DNA, cytarabine rapidly converts to a new compound that stalls cellular replication in the S phase of mitosis and perpetuates cell death. Quite literally, the replicating cancer cells are tricked into a state of stasis and eventually disintegrate. That’s the fascinating part.

The terrifying part is that, like many chemotherapy agents currently in use, cytarabine is not very specific. It is a poison on the cellular level and causes cell death in ALL dividing cells, not just cancerous ones. The most common side effects of cytarabine are low blood cell counts (white cells, red cells, and platelets) and suppressed bone marrow function. Given in high doses, cytarabine can obliterate the bone marrow to a near catastrophic level, which explains why most patients receiving these injections will require at least one, and most of the time several, transfusions during treatment.

I pulled the stretchy latex glove further onto my right hand, the blue cuff snapping against my wrist and startling me to action. Hazel began to whimper as I turned and gently pinched a couple inches of her skin on the back of her right arm. Using a small square of gauze soaked in alcohol, I swabbed the skin between my fingers for a few seconds. She was sitting on Elizabeth’s lap with her face buried in her mother’s chest, doing her best to block out what she knew was inevitably coming next. I picked up the syringe and waited for the alcohol to evaporate for just a few seconds more. If I were truthful, I was just stalling, working up the courage it took to inject my own daughter with a chemical cocktail I knew full well was going to wreak widespread havoc on her internal systems and bring her already fragile immune system to the precipice of collapse yet again.

I hesitated with the needle poised just above her skin, noting how perfect and unscathed the site of injection looked. Hazel’s skin is still the baby-soft, milky cream that all toddlers seem to be blessed with, her arm a smooth, picturesque landscape yet unmarred by the ugly disease that broils within her. In a halting, unpracticed motion I plunged the needle into her arm, sinking it to its base as I felt it penetrate through the outer epidermal layer and then further into the subcutaneous fat that lies just beneath the surface. I was surprised by how much of the trauma of the injection I could feel through the syringe and hesitated yet again before pressing the plunger down slowly to deliver the toxic chemical into her system. I counted, “One…two…three…four…five” before pulling the needle out of her arm and quickly covering the site with a small square of dry gauze. I deftly slapped a Trolls band aid on the tiny red dot of insertion and then tossed the spent syringe in the blood-red sharps container provided by the hospital.

Hazel was crying now, not out of pain, but instead of betrayal. Tears streamed down her smooth cheeks as she stared over at me from her mother’s lap, the look on her face not one of sadness, but complete bewilderment. I heard her ask her mother, “Why Daddy poke me?!”, as the two of them whisked into the living room to snuggle and comfort one another on the couch.

I stood in the dining room, shoulders slack, arms at my sides, staring blankly at the carnage of medical supplies laying in front of me. Opened gauze packets and band-aid wrappers littered the white disposable absorbent pad we used as a staging area for the chemo. Single-use needle caps were strewn across the pad, lying messily next to a bright yellow, resealable plastic bag with the word “Cytotoxic” stamped in large, nasty letters across the front. I pulled off my mask and gloves, then tore off the clumsy, blue chemo apron I was forced to wear while giving Hazel her injections. I wrapped up all the spent supplies into the absorbent pad and stuffed the entire, sterile smelling packet into the garbage can.

I immediately went to wash my hands, the last of the seemingly pointless ritual of relentlessly protecting myself from exposure to the medicine that I had just readily injected into my baby girl. As I let the hot water wash the suds off my hands and wrists, I stared at my tired face in the mirror. My eyes were bloodshot and sunken with dark circles beneath them. Deep set lines started at the corners of my eyes and radiated out like a spider web of worry, spreading across the lower portion of my cheeks and running into my unkempt beard. I looked terrible, aged, exhausted. No sparkle to my eyes, no smile on my face. I showed the signs of running on adrenaline-fueled fear for months on end, always focused on the next goal in the treatment cycle and hoping against hope to avoid visiting the Emergency Room for a fever or a scraped knee. I couldn’t help but think, “It’s not supposed to be like this. How did we get here?”

I finished washing my hands and then patted them dry on the coarse hand towel hanging on the rack. As I walked into the living room, I could hear Elizabeth and Hazel talking quietly, about what I wasn’t sure until I crossed the threshold and they both immediately turned to face me. Hazel came trotting over with a quiet pitter patter of unsocked feet and shot her arms straight into the air, indicating she wanted me to pick her up. Grateful for this peace offering, I scooped her into my arms and stood up. She threw her arms around my neck and squeezed tight, laying her tiny bald head on the top of my shoulder with her delicate lips pointed toward my left ear. Ever so quietly she whispered, “Daddy, I okay. It doesn’t hurt anymore.”

I felt sick to my stomach knowing what I had done, what I HAD to do to save her. Fathers are supposed to protect their daughters, to keep them from harm at all costs, but I was knowingly poisoning my daughter’s cells. I was taking her to the limits of her tiny little body so that hopefully all that survived the cellular onslaught were healthy, non-cancerous cells.

Our oncology team does a wonderful job of educating and preparing us for what can and often does come during this journey. But there are many things that they simply cannot predict; the intangible realities of living with an ever-changing and evolving disease. Seven months ago, I could not have known that a bout of chicken pox would put us in the hospital for eight days, followed by 7 more days of intense outpatient medication. I wouldn’t have guessed our Thanksgiving celebration would be bookended by trips to Nationwide Children’s Hospital for platelet transfusions because Hazel’s bone marrow was too decimated to create her own. And I never could have imagined the nightmare of having to deliver chemotherapy to my baby daughter in my own dining room.

The life we now live is filled with experiences that are only normal if juxtaposed against the lives of other families dealing with cancer. At times it seems we are living on a different planet in a far-off galaxy, the everyday normalities of our old life long forgotten as we trudge forward into new and unexplored caverns of self-pity, worry, and sadness. We watch from afar as other families continue with various parts of their normal lives, not out of jealousy or contempt, but oftentimes out of a type of detached curiosity. What does it feel like to NOT constantly worry about fevers, bug bites, bumps, scrapes, and bruises? How does everyone else have so much energy to do the things that they want to do? What does the freedom to go anywhere at anytime without worrying about ANC, platelet counts, and hemoglobin levels feel like? I honestly don’t know anymore what any of those things are like, such is the curse of never fully letting our guard down or relaxing.

Someday in the distant future, I hope we can once more know that kind of normal. I hope to never again have chemotherapy drugs enter my home or be delivered in my presence. I hope for a redemption for our family and healing for Hazel that is complete and everlasting. Most of all, I hope that someday Hazel will forget all she has gone through. I hope for these things, yet I cannot guarantee them. I have no way of knowing what tomorrow holds, but for now, Hazel’s sweet, angelic voice whispering in my ear is enough to keep me going.  

I nuzzled my beard against Hazel’s temple and lower my voice to a barely audible whisper, “Little one, I am sorry for your pain, but I am even more sorry that I have had to join the long line of those that hurt you. I promise this will all end one day, and I hope when it does you can forgive me.” She stared up at me, eyes twinkling and her tiny chiclet teeth gleaming as she grinned. My forgiveness was already granted, my pardon - assured. 

As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust…from everlasting to everlasting the Lord’s love is with those who fear him…” – Psalm 103:13-14, 17

A Time of Thanksgiving

 “Diiiiing!” The bell reverberated its alarm through the small concrete corridor, indicating the elevator car was about to arrive. The small white triangle above the cold stainless steel doors glowed bright white, pointing up almost as a symbol of warmth or hope for what was to come. “Shoooomph”, the doors slide open as the car haltingly comes to a stop and bodies begin to file out. The inside of the elevator car is a rectangle, perhaps four feet deep by seven feet long, but the capacity of such a small space seems to be expansive as each member of four different families exit the elevator, intent on finding their vehicles and heading home. We wait until the last person exits the doors and then I wheel Hazel’s stroller into the elevator. She sits quietly, patiently as her mother and I situate all of our bags filled with the “necessities” for a day trip to the chemo clinic.

Hazel is wearing a matching purple sweat suit with a bright pink pair of socks, no shoes of course. She never would have worn an outfit as warm or billowy prior to getting sick, but this has recently become a staple in her wardrobe. The elastic waistband of the pants provides enough give to avoid irritating the sensitive skin around her waist and the sweatshirt keeps her warm as we travel up and down cold hallways in the hospital. Hazel’s face is covered by a disposable mask decorated with Mickey and Minnie Mouse and her head is covered by her floppy Hello Kitty hat, a fairly unimpressive adornment considering some of the other options she has at home, but this too has become one of her favorites.

Made of cotton jean material with well-worn seams and a full brim to surround her tiny bald head, the hat has been more than a head covering these past few months. It has been a place of solace, a barrier to stave off the assaults of the sun and the whipping winter breezes, to keep prying eyes at bay, and to provide a look of normalcy when she stares at herself in the mirror. The hat allows Hazel to escape the realities of her world, if even just a little bit. Each time as I carry her into the hospital, she holds its brim down with both hands, pulling the material tight to her head and covering her ears to drown out the sounds of the bustling wards. Her hat is a safe place, a shield, a private room in an otherwise non-private life. She doesn’t use it to hide as much as she uses it as a filter to manage the visual and audible inputs to her life. The hat was a gift from a loving person on this earth, yet I will always think of it as a personal gift from God.

Several more people insert themselves into the elevator space with us in a cordial version of bodily Tetris, and the elevator doors begin to slowly close as a thin, white hand slides through the crease and sends the doors open again. A young man, no more than 18-19 years old jumps on the elevator and apologizes profusely to its occupants for holding us up. He looks around with a sheepish grin and presses the button for Level 2. “I got a new baby up there,” he says, and looks expectantly at each of us with his finger hovering over the buttons so he can press our floors too. “Eight please,” says a middle-aged man wearing the formal looking suspendered-slacks and bright blue button up shirt of the Amish or Mennonite faith. Two blond-haired boys peer out from under the protective shroud of his weather-beaten arms and his wife pushes a stroller with a tiny baby girl swaddled and sleeping soundly. She looks picture-perfect, save for the thin plastic tube that wraps around her delicate facial features and runs to a small metal canister housed in the bottom compartment of her stroller. The eighth floor is the pulmonary care unit and I can tell by the looks on the family’s faces that they have frequented this upward journey many times before now.

“Twelve, please”, a woman of about 65 says quietly from the corner. The new father presses the buttons for eight and twelve, then looks expectantly at me. “Eleven for us, thanks”, I say then look down at Hazel as she cranes her neck to see the Amish baby sleeping soundly in the stroller next to her.

“Wow, eleven and twelve, huh? The penthouse suites, I guess, right?”, the young man spits the words out without thinking and in a half joking tone that begets his naivety. I quickly meet his gaze and he can tell his words have caused some unknown pain, the glee on his face sliding into apologetic bewilderment. He drops his eyes to the floor and as the elevator lurches into its upward motion, I say dryly, “Yeah, not quite.” I know it’s not his fault, he is here to celebrate his new baby, high on the adrenaline of becoming a new father and focused on the vibrant feelings of being young and having a family. He has no idea what the other floors of this hospital hold, what untold horrors other families have experienced here. He doesn’t realize that as you ascend the floors of this hospital, into the ever higher stratospheres above, that the ailments treated become more and more dire, the circumstances increasingly grim.

We reach the second floor and the young man departs, giving one last furtive glance around the elevator as if to apologize without words to any he has offended. As the doors close and the elevator car once again begins to rocket upward, I am struck by the intimacy created by this mode of transportation. Each floor of this hospital is separated from outside access by numerous security measures, including guards, cameras, and electronic key cards. By default, if not design, those patients treated on one floor may never set foot on another floor for the entirety of their treatment, and thus are both physically and emotionally separated from what goes on eight feet above and three below them on a daily basis. The elevators connect all of those floors and provide one of the only places that patients from different wards can interact with one another.  The elevator is the vehicle of hope for all of us, regardless of what we are battling. We all board at the base level and then begin our journey toward the angels in the sky that can help our babies. It is no coincidence that the oncology floors at Nationwide Children’s Hospital are located the closest to heaven. It makes the commute for God shorter as he peers in each of those twelfth floor windows and keeps watch over his little ones that are suffering.

The Amish family quietly exits on their floor, the youngest boy trailing slowly behind and turning around to shyly wave at Hazel as the elevator doors close, and our journey upwards continues. “The top floors here aren’t fun places to be, are they”, the older lady says as the digital numbers on the floor display click by rapidly. “No they aren’t,” I say as I glance over at her. She is dressed comfortably and carrying a small bag with two knitting needles sticking out of the back side. She clutches a children’s book, the name of which I can’t see, close to her chest and looks up at the ceiling, as if she can actually see the next floor approaching. “I’ve got a grandson up there,” she says proudly. “I have visited this hospital every day for seven years. I’ve never seen him outside of his hospital room, but I believe someday that I will,” she says with a smile. I can tell she means it. I have to look away because the wave of emotions from that simple sentence is shocking to my system. I stand in stunned silence as I contemplate the devastating reality of this woman’s life and the sheer magnitude of faith that must live in her to continue to go on when faced with such overwhelming odds.

The elevator slows to a stop and the doors slide open to reveal H11, our floor, the oncology clinic. As we are exiting I smile at the older woman and she grins back, motioning toward Hazel, “They do amazing things on these floors you know. She’s going to be ok.” I sigh and choke back tears, “I know they do. Good luck.” She nods, the elevator doors close, and the car disappears, continuing its journey upward into the heavens.

The holidays are a time of reflection to remember all of the blessings in our life from the past year. During this time of year, we celebrate family, friends, wealth, health, and happiness. As we sit down to meals, we pray in thanksgiving and for continued blessing as the new year looms on the horizon, our minds alive with the possibilities of new beginnings and continued success. Sadly, I cannot truthfully say that I have rejoiced in every step of our journey this past year. I also cannot say that I am thankful for Hazel’s cancer diagnosis, for what it has done to her and to our family. But I am able to say that I am thankful for many things.

I am thankful for the attentiveness of my wife to our children, without which Hazel’s condition may have lingered longer and made her prognosis less positive. I am thankful for access to exceptional medical care and doctors that not only treat a disease, but love on their patients. I am thankful for friends that immediately stepped in to help our family the very day they heard of Hazel’s diagnosis, providing not only financial, but emotional and logistics support many times over the past months. I am thankful for a caring, close knit family that has helped us in so many ways at the hospital and at home. I am thankful for a church family that loves us and finds subtle ways to give us strength and encouragement during all phases of Hazel’s treatment. I am thankful for prayer warriors that continually lift my family to the throne of God and provide a blanket of safety and warmth in the harsh, cold days of our struggle. I am thankful for a job that has allowed me to be with Hazel for every check-up, every needle stick, and every chemo infusion.

But most of all, I am thankful for the good days, the days when Hazel laughs her deep belly laugh and flashes her bright, toothy smile and looks at me, eyes gleaming and full of life. The days when she runs through our living room and dives into the pile of blankets on the couch and giggles, “Daddy, snuggle me.” The days when cancer is not the first thing on our minds and all that preoccupies our life. I am thankful that we can still have those days, even as we await and prepare for the days of sadness and strife that inevitably follow.

As we all celebrate this holiday season, let us not forget those that are somewhere in the hallows of a lonely hospital ward, facing the inexplicable struggles of a condition they did not cause and over which they have no control. In those quiet, sterile care units are often found some of the strongest examples of faith you will ever see on this earth.

I will forever remember this year and the many struggles through which my family has traveled. Each event is scarred into my memory in ugly detail, a permanent memoir of terror, anguish, and pain. But I will also remember the good times: the beach trip, birthdays, celebrations, and daily snuggle fests. I will remember Hazel’s strength during this time and the people we have met during our journey. I will remember that even in the darkest of times when I thought I could handle no more, God never abandoned me.

From my family to yours, Happy Holidays and God Bless.

“Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Psalm 73:23-26

A Father's Love

“Daddy, why you lub me?”

Hazel posed this question several times on our most recent string of overnight stays at the hospital, first for chicken pox and then a 24-hour stint to receive her next round of chemo. She says the question with a sly grin on her face and in a tone that hides a half-hearted attempt at laughter. She is teasing in her own way and loves to hear her mother and I try to put into words the true emotions that her question evokes in us.

I have yet been able to eloquently answer her question beyond the words “Because you are perfect, dear.” I stumble through saying it and then have to avert my gaze from her sweet little peach-fuzz covered head lest she see the tears welling up in my eyes. Such a short, simple question stirs emotions and explanations of such complexity, it is difficult to imagine that she could understand my true answer. And yet I hope she does understand, if not today at least someday in the future after all of the horrors of her current situation subsides.

Why do I love you, Hazel? The answer to that question lies deep in my being, rooted in my heart and connected to my soul. It may be a difficult concept to put into words, but today I will try. Hazel, this one is written directly to you, baby-girl:

I love you because you are a blessing; a wonderful gift from God that I cherish and marvel at each day. When you were born, you entered a family of five that didn’t realize we were incomplete. We were all there to witness your first breath and the first people you laid eyes on in this world were your siblings. I caught you as you were born in the very bedroom you now sleep, and your mother provided the first measures of comfort as you lay wide-eyed, taking in all the sights to the sounds you had heard for so many months in her womb. You were the first miracle that your brothers and sister witnessed firsthand, and you forever changed the course of their lives. They protect you fiercely, love you unconditionally, and cannot imagine a world without you.

You have tremendous compassion and are always thinking of others. Your mother and I have searched for ways to weather this storm over the past months and you have always been quick to comfort us, holding our hands as we trembled, caressing our cheeks as we cried. We have been broken, beaten since the day you were diagnosed. We are weary from our worry for you, but even though your body is the one being assaulted, you have always come to our rescue, like a tiny martyred savior delivering a message of serenity from above. You have calmed our hearts and assured us that all will be okay.  

You love life and have fun in any situation. Your laughs have echoed down the hallways of H12, crowding out the heavy silence that blankets the solemn corridors and closed doors. You bring joy to all around you and people beg to be in your presence. You have not once allowed your disease to dampen your spirit, remaining a beacon of light for others in even the darkest of times. Your giggle is infectious, your sense of humor unabashed. I love the crinkle of your nose when you smile, the dimples in your soft pastry-like cheeks, and your deep, heartfelt belly laugh when tickled.

You are strong, courageous, and daring. You fear nothing, back down from no one, and always speak your mind. You have a fire in your belly that begets passion and fuels your sense of adventure. Cancer does not scare you. You march into the hospital as if going to war, and in a sense you are, waging countless waves of battle on something you cannot see or comprehend. You withstand unimaginable pain with barely a whimper, remaining compliant with the throng of doctors, nurses, and specialists that constantly poke and prod you. The treatments you undergo are tough, often depleting you to a state of exhaustion and sickness that parallels that of the actual cancer that started all of this in the first place. It sometimes takes you weeks to recover from a round of chemotherapy, but you slowly, excruciatingly fight your way back to health and continue along the path set before you. I am unlikely to ever see a display of strength so great in the remainder of my lifetime.

You are a purposeful fighter with a love of family that is innate to your being. Tears stream down your face as your own parents deliver medications that will bring an onslaught of dismal side effects, yet you never complain, never fight back, never tell us to stop. You believe in us, having faith that we would never do anything that was meant to harm you. Even when you are weak, you beg to play with your siblings, drawing strength from their presence and vibrancy from their laughter. The best days of your life right now are when all of your “people” are together under one roof, living, laughing, and loving together as one.

Hazel, you are incredibly special and unbelievably blessed. You are the culmination of all things good in my life and forever have stolen my heart. I love you so much more than words can possibly describe and will spend the rest of my life working to make yours better.

My dearest Hazel, I will answer your inquiry with my own question, for it is not “Why do I love you?” but instead “How could I not love you?”

“For I wrote you out of great distress and anguish of heart and with many tears, not to grieve you but to let you know the depth of my love for you.” – 2 Corinthians 2:4