A Year Like None Other

“Yet I will praise You

Yet I will sing of Your name

Here in the shadows

Here I will offer my praise

What's true in the light

Is still true in the dark

You're good and You're kind

And You care for this heart

Lord I believe

You weep with me”

- Weep with Me, Rend Collective

The short verse above is a snippet from a song that has been on repeat on my playlist ever since I heard it earlier this year. These words are powerful, an expression of love and admiration mixed with the desolation of grief that at some point we all feel in our walk with God. I have not posted for awhile, but that does not mean I have not been continuing to explore the emotional abyss that is dealing with childhood cancer. Never more poignant has this struggle been than the month of September as we not only observe Childhood Cancer Awareness month, but also prepare to celebrate Hazel’s birthday. My recent explorations and musings have been more internally focused, attempting to use my pen to make sense of life following April of 2017. I have studied loss and struggle throughout the Bible, learned the meaning and purpose of lament, and spent countless hours of reverent silence to allow God to rebuild that which was torn down over a year ago. I hope to someday reveal the results of this exploration in an actual published format, a memoir of our walk through this valley and an encouraging word for others as they trod the same path. For now, however, I will simply provide an update on Hazel’s progress thus far.

Hazel has had an amazing 2018. We were blessed to enter the Maintenance phase of her treatment earlier this year and she has been adapting amazingly well. Compared to last year’s bouts of sickness, hospital stays, and in-home quarantines, 2018 has been wholly different. Hazel’s cacophonous laughter can be heard throughout our home day in and day out. She runs, she jumps, she dances, and she sings constantly. In a matter of weeks she has fully potty trained herself, she does “homework” with the kids, and draws endless happy pictures, many of which are hung up in Daddy’s office. She is attending dance and tumbling classes this fall and starts soccer in October.

The Miller’s life has returned to a near normal state of affairs with a completely full schedule of activities and school. Unfortunately, Leukemia still exists in our house, never more evident than at night as Hazel uses her own tiny hands to push the liquid chemo out of a syringe and into her mouth or on clinic days when we all once again travel to Columbus. By all accounts Hazel is doing amazingly well, which means most days are filled more with rejoicing than with remorse.

Our year is much different than it was last year, but also much different than many others in our “community” of cancer friends. We have witnessed loss over the past year that has destroyed families, watched as lives were lost and hearts broken. We have done our best to comfort others, weeping with them as battles were lost, mourning the time foregone by an ugly, unrelenting disease. We are thankful for Hazel’s success, but saddened by the pain others must endure.

Hazel turns 4 this coming week, and though our life looks much different now than it did a year ago, we thank God each additional day we get to spend with her. I don’t know what our future holds, and I don’t need to, because our here and now is pretty great.

Thank you all for your kindness and support through this most difficult time in our life. God has shown us his love through loving people around the world and we praise him for it.

“Don’t be afraid, for I am with you. Don’t be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand.”                                                        - Isaiah 41:10

A Child’s Prayer

“Dear God, we thank you for this food, we thank you for our family, and thank you for not making Hazel die from cancer. We love you. Amen.” – Gideon Guthrie Miller

A newly established rule in our household is that each of our four children are given an evening in which they not only choose the menu for the evening, but they also help prepare and bless the food prior to our meal. Those two and half sentences were the prayer my middle son prayed tonight over dinner, a tiny soul speaking with heartfelt innocence and the untold wisdom of the meek. Gideon’s prayer is telling of this season of our life – it was uncoached, yet not unprovoked. Today was the funeral of yet another “tiny big fighter” – a small warrior stricken by pediatric cancer and stolen too soon from this world. Gideon and the rest of my tiny hoard had been to the funeral today, they had watched as a family mourned the loss of one of their own and said goodbye to a life full of potential and expectation. My children saw their mother hug another woman in sorrow, crying in pain of her own, and feeling the same devastating loss in her heart as the two wept in unison over the foregone memories that will never come. These women held on to one another, intertwined in an agony unknown by many, yet upheld by the untold strength of a few.

Cancer is ugly, it is unforgiving, and it is brutal. It tears people and lives apart, breaks spirits and casts shadows of doubt on all aspects of our faith. We are surrounded by the effects of cancer every day, often forgetting how insidious it can be until it is thrust in our path. Unbeknownst to Gideon, but completely present in his mother and I’s minds was the fact that several hundred miles away, another mother also wept for life lost. Gideon’s grandmother, my mom, had only hours before spent the final moments of her sister’s life clutching her hand and praying that God let her pass into his presence gently. Riddled with a cancer that had come on quickly and shut down many of her systems simultaneously, my aunt had bravely marched into an unknown battle with the odds stacked strongly against her. She remained a mother to the end, a matriarch determined to go out on her terms leaving behind children, a husband, her brothers and sister, and worst of all, her grandbabies. In her passing though, Aunt Lin knew what she was doing, rekindling long forlorn relationships and bringing family to the forefront of everyone’s minds once again.

I have witnessed some amazing things this past year as I have watched Hazel battle Leukemia, but I have also become innately aware of the harsh devastation that cancer leaves in its wake. We have joined the ranks of many whose lives will never be the same after experiencing the “emperor of all maladies” – and still we trudge on, arms locked, heads bowed, leaning in together to face the unknown.

Modest, unpretentious prayers are often the most beautiful and the most meaningful – they bear out our true selves, boiling down our emotion, worries, fears, and desires into a simple sentence or two that speak volumes about our character. It is humbling to hear the words of young ones speaking to our almighty Creator. Children pray simple prayers, not yet conscious of or able to convolute their meanings with complicated phrases or elaborate soliloquy. They commune with God in a relationship that is open, honest, and carefree.

Gideon’s prayer was not meant to cause a lump in my throat or cast a solemn tone over the remainder of our meal. It wasn’t meant to make me think of the loss of others or to point out how blessed our journey was compared to other possible outcomes. Quite simply, Gideon’s prayer wasn’t for me, it was for him and God. Gideon spoke truth that exuded the meaning of the Gospel in 26 words. His prayer displayed a faith of purity, integrity, and a depth of reality found only in a risen savior. Gideon’s simple words indicate that he understands some very complex truths: 1) Life is a precious gift and something to be celebrated no matter how long or how short, 2) Our God is bigger than cancer and has the power to move mountains, and 3) God’s plan is eternal. When my head hits the pillow tonight and every night hereafter, I hope I can keep my prayer as simple as: “Dear God, Thank you for this life and the life ever after. I love you. Amen.”

“There is no fear in love; but perfect love casts out fear, because fear involves torment…We love Him because He first loved us.” – 1 John 4:18-19

Life on a Page

“You can't call it an adventure unless it's tinged with danger. The greatest danger in life, though, is not taking the adventure at all. To have the objective of a life of ease is death. I think we've all got to go after our own Everest.” – Brian Blessed

The rhythmic thump of the motor reverberated in my ears, drowning out all other sounds of the early morning and lulling me into a trance as the large red and white hull of the fiberglass boat bobbed along on our journey upriver. I was barefoot and could feel the large steel prop whirring at 1900 RPM as the blades chopped through the water, churning the black abyss of the river into a frothy white backwash that trailed behind us like slowly dissipating stars. I had the front windshield of the boat thrown wide open, letting the wet breeze from the morning mist soak my face and fill my nostrils with the smell of early Fall – leaves, dirt, river mud, and just a hint of the cold, impending rain.

The 35-year old boat lurched as a four-foot breaker cut across our path, slamming into the rounded nose of the boat and sloshing foam up onto the front deck. I grinned as my knees bent instinctively and I leaned into the roll. The silver captain’s wheel didn’t even buck in my hand as the well-worn keel kept us cutting through the waves, steadfast to our heading for the point of the far off island I had chosen about an hour ago as our next waypoint. The old boat wasn’t pretty, but she handled the river well. She had some rotting wood here and there, some peeling paint, and maybe a leak or two, but she was our first houseboat and we loved her – scars and all.

Elizabeth emerged from the lower bunk of the boat, two steaming cups of coffee in hand. She gave me one and curled up in the window seat, staring across the bow of the boat as the world woke up. “Think we will make it before the storm hits,” she asked. I said, “I hope so. The cloud to the right looks pretty nasty.” I squinted into the distance at an advancing wall of darkness, sharp explosions like veiled firecrackers telling of the violence shrouded in the clouds and rain that would soon be upon us. I bumped the throttle control with the palm of my hand a few times, easing the engine into a more urgent RPM range as I steered into a straighter approach for the island.

The wind was beginning to pick up and white caps now surrounded us, breaking the calm glass of the water’s surface and rippling it into the bottom of our boat. I heard stirring from below, and turned to see a tiny red head pop up above the top step of the approach ladder. Hazel clambered up onto the enclosed foredeck and toddled her way toward me, excited that she was the first of her siblings awake. She walked better on a tossing boat than most adults I had been out with, the concentration on her face apparent as she hustled to get to the front window. I scooped her up into my arms in a bear hug, burying my face into the nape of her neck to breathe in that beautiful, delicious baby smell that she still had. Steering the boat with one hand, I flipped her around and steadied her with my other hand on the top of my knee. Eyes wide, she thrust her head out the windshield and let the wake spray drench her face. She giggled as the boat tossed, heaving into the stiff wind at an angle and rolling up onto the lip of a wave that would have swamped a smaller boat.

Hazel loved every minute of this adventure, her bright blue eyes beamed with excitement as she took in the sights of the coming storm, the angry water, and the howling winds. She jumped from my lap and stood at the sliding glass door that accessed the starboard deck, face pressed against the glass to watch the world on the bank slip by as we headed further into the storm. Like a small sailor, she bobbed and weaved as the boat danced across the rough water, laughing as we climbed the small peaks and then plummeted into the troughs, blowing white spray out each side of the bow as we steamed forward. Not once was Hazel afraid, not once did she cry or whimper. On the water, her heart was at peace and her soul was free – she feared nothing.

We sold the boat a few weeks after that trip and our houseboat adventuring came to an abrupt halt. We plan on buying another boat at some point to replace The Little Nauti, but for now living boatless, away from the open water is the best way to keep Hazel safe. Hazel is no less adventurous than before, but her adventures are different now. It is hard to believe what she has endured a mere year and a half after that stormy day.

The past month has been a hard one for my family, not because of our journey, but because of the journeys of others. Our resolve has been tried as within a span of less than 20 days, two families that were close to our inner circle had members that lost their battles to cancer. These two warriors could not have been more different in physical appearance, and yet so similar in spirit. I read the obituaries of each warrior, learning about their families, sharing in their triumphs, walking in a short snapshot of their lives through words on a page, and felt heartbroken as I realized two stories – two lifetimes of adventure – had been snuffed out by the same silent, deadly killer that lives in my house today.

The first warrior lived a long and colorful life before cancer came knocking on his doorstep. He had seen and experienced much, completed many goals, built a life, loved and lost. The old warrior had spent decades walking his path in this world, touching many lives, and creating a legacy that overflowed onto his page in vibrant prose. His life was well spent, invested in those that were important to him and meaningful throughout.

The other warrior was young, having spent 1/40^th of the time on earth as that of the old warrior. His life had hardly begun. He didn’t have a career, didn’t have a family of his own, had not built a legacy yet. But he still had a page. His page may have looked different than the old warrior’s page, but it was no less important and he was no less loved.

At the end of each of our lives, we are given a single page with words that memorialize our lifetime. Last year I was afraid that I would be writing Hazel’s page before my own, telling the story of a life stolen too soon, pitted with sadness over time lost and opportunities missed. My prayer is that I will never write Hazel’s page and that I will have passed on long before that time comes, but my heart aches for those who have written their own warrior’s life stories or are writing them now.

Hazel’s love of life reminds me that all of our pages are the same length, and it is the quality of what fills those pages that makes a difference. Hazel’s life has been rich, it has been meaningful, and it has been beautiful. I am blessed to be a part of it. Hazel lives every day like an adventure. She cherishes every moment, loves hard, and fights harder. I believe all of our cancer warriors are arbiters of good, that they understand the profound power of love and family, and that they will forever live on in our hearts.

Thunder cracked in the distance as we turned at the island point and began our final approach into the harbor, about to narrowly escape what was sure to be a truly epic storm. Whereas the open river had been choppy and rough, the harbor was calm and almost serene. I throttled the motor back and began to coast into the chess board of docks that signaled safety. The sounds of moored boats – squeaking deck hinges, water against lapping hulls, and the soft, hollow thump of gunwales on dock edges – greeted us as I shut the motor off and glided silently toward the open section of dock that our boat called home.

As the nose of our boat bumped gently into the white dock fender, I turned around to see Hazel standing at the back door of the boat, wistfully staring back toward the open water we had just left. The look on her face was not sadness or fear, but a longing, a deep set need for something lost. I went over to her and slipped my arm around her shoulders. She sighed heavily, and then wrapped her tiny arms around my neck, squeezing gently. I picked her up and we stood staring as gumball-size raindrops began pelting the back glass and the storm rolled into the harbor. We were safely tied to the dock and our adventure was over for that day, but little did we realize what the future held for our family and Hazel’s page.

“You will make known to me the path of life; In Your presence is fullness of joy; In Your right hand there are pleasures forever.” – Psalm 16:11

The Morning Light

The waves crashing to the beach thundered in my ears, a cacophony of the tremendous liquid power that stretched for miles in front of me. I stared at the far off horizon, lost in the endless darkness that stitched together the rolling black sea and gray sky. In the distance small flashes of light backlit the jagged edges of the receding storm clouds that had only hours before engulfed the beach on which I stood. The wet sea breeze blew against my face and condensed in my beard as a cool, salty mask, delivered by air that smelled fresh, crisp, and clean, but hinted of the recent rain. The cool, wet sand curled up between my toes, and the calls of gulls signaled the soft beginnings of the day.

I breathed deeply and allowed myself to bask in the glorious beauty of my surroundings, my momentary escape. As I closed my eyes, images of the past year played vividly in my mind like a cinema, forcing me to relive the drama, strife, and eventual triumph I had witnessed in a mere 12 months’ time. Warm, gentle tears streamed down my cheeks and leapt to the sand below just as a sliver of the sun began to crest the blue green waves to the east. Slowly, a bright orange fireball began to climb into the far off sky, scattering the lingering gray clouds and burning off the light mist that hid the waves. Birds floated effortlessly through the yellow layers of light as shadowy dots, disappearing on their journey to faraway lands and seas. White wave crests exploded as they collided, blowing clouds of watery diamonds high into the air and churning the green ocean into a frothy whirlpool as the water charged toward my feet.

Quietly I raised my face to the heavens, my mind clear, my heart light, and I prayed a single, simple prayer, “Thank you, Lord, for your goodness.”

I have found it hard over the past few months to completely express my thoughts and feelings since Hazel entered the maintenance phase of her treatment. We were always told that this phase of treatment was “easier”, that it was where you “wanted to be” in your treatment course because it meant lower doses of chemo, fewer hospital visits, and a lifestyle that would feel “semi-normal”. Given these statements, I made getting Hazel to maintenance phase my ultimate goal as soon as we entered induction phase in April of 2017. I saw each new phase of treatment as little more than a milestone on our journey toward maintenance, closer to her bell ringing, and closer to being cured. I created charts and tracked her progress, planned for the official first day of what would be her final and longest phase of treatment, and I daydreamed about what it would be like to return to a more “normal” life devoid of hospitals, fevers, and cancer concerns.

Like many Leukemia families, we experienced several setbacks over the transitional months between induction and maintenance, most of which seemed to involve hospital stays, additional medications, and even more side effects. Our journey to get to maintenance was smoother than most, but rockier than some, and as we approached the day when Hazel would transition to this new phase I found myself with a new, heightened anxiety that bordered on manic. I was so concerned with getting into maintenance that on the last few days of the transition I could barely sleep, waking at all hours of the night and letting my mind wander and worry about anything and everything associated with our journey. I would get up in the middle of the night and just watch Hazel sleep, nestled gently into the crook of Elizabeth’s arm and silently dreaming the sweet dreams of a 3-year old. I prayed over my family incessantly those nights, all asleep in their beds, all safe, but all under my watch.

The day finally came when the oncologists told us that Hazel would officially transition to maintenance and that 18 months from that day, would be ringing her bell. Sitting in the infusion room on the 11^th floor of NCH that day, my world changed. I had been on what seemed like an unending, ever-faster rollercoaster of emotions and anxiety, careening toward this major goal that seemed like it would never be realized, and then suddenly...all of that stopped. I felt like I needed to rejoice, dance, scream, done something to outwardly show how happy I should have been, but for some reason I just couldn’t. I was numb and felt somewhat emotionally lost. That five-minute conversation will be etched forever in my memory as one of the greatest moments of my life, and yet it was over in a flash and I was left sitting in the infusion room confused at what to do next.

We are now two months into maintenance phase and I can’t help but feel that while everything has changed, nothing is really different. We are able to do much more as a family now and we visit the hospital far less than in the early phases of treatment, but we still fear fevers, we still have chemo, we still sanitize EVERYTHING, and we still live with cancer. Most of all, I am still tired. I am tired of everything being hard. I am tired of the constant struggle of remembering medications, dosages, cell counts, and side effects. I am tired of bloodwork and chemo. I am tired of watching Hazel put on a brave face when we load up the van to head to the hospital. I am tired of telling her that she can’t play in water, that she can’t be in the sun, or that she can’t eat in a restaurant. I am tired of chemo holds, nagging questions, and the constant worry that Leukemia will once again rear its ugly head and shove its way back into our life. But even though I am tired and numb and lost, I remain thankful.

My family has experienced a tumultuous year of pain and tragedy. We were caught in the throes of despair as one of our own suffered tremendously, and had our hearts broken with each devastating setback. My children have lived with death on their doorstep, a dark cloud of anxiety surrounding our every waking moment. We have said goodbye to pets, family members, and longtime mentors. We have lived with heartache, fear, and frustration. My family has wept for months on end, with seemingly no end to the darkness laid out before us. We have watched helplessly as our peace has been shredded and stripped away at the hands of an ugly, faceless tormentor. My family has experienced loss in its truest sense, and yet, we are not lost.

Even in our darkest times, when we are brought to our knees in anguish, breathless from battle, my family has been protected by the hand of God, guided by his light and strengthened through his Word. This experience has brought each of us to the end of ourselves, pushed so far beyond our own limits that our only choice was to rely on Christ’s reckless mercy to hold us up. It has only been through losing myself that I have truly found God. I have seen His work, felt His presence, and experienced His love.

I am an insignificant being, an anonymous voice among the throngs that endlessly lift to Christ’s ears, and yet, I feel as if I have met him in person. Cancer is horrible, it is devastating, and it robs you of many things, but it also puts you in a place to receive indescribable compassion from the people that surround you. Christ’s love pours out on our family daily and I am continually amazed at its depths. My family has struggled, and we continue to struggle, but we are so blessed.

In late 2017, I received an email from an organization called Believe In Tomorrow Children’s Foundation, which provides respite housing for families of critically ill children. Our family was chosen to become part of the BIT program and they offered us a chance to visit Ocean City in the Spring/Summer of 2018. We were unable to take a family vacation last year as Hazel was far too sick to travel anywhere over a few hours from her main oncology department. We had many “staycations” where we enjoyed some time off of work and just being around the house and town, but we never departed for our typical Miller family exodus from Ohio to touch the Atlantic off the shores of Hatteras Village in the OBX. The BIT trip made a lasting impact on my family’s life, and helped shift my perspective back to where it should have been all along.   

On that brisk, early morning, I was not alone. I felt a small, warm hand slip into mine as the sun rays scattered onto the beach. Elizabeth wrapped her arms around me and snuggled into my sweatshirt. I look down to my left as Gideon buried his head into my hip, still rubbing sleep out of his eyes. Rora, golden blonde curls spilling out of the front of the hood of her bright pink sweatshirt, wriggled in between Elizabeth and I. Finally, Paul walked up alongside us, eyes focused forward in a far-off gaze and mouth open in awe. On Paul’s cocked hip, arms thrown recklessly around his neck and head leaning into his shoulder, sat Hazel. My little brood stood in silence, watching the world wake up, each lost in our own thoughts, managing our own waves of emotions as we communed with each other and with our God.

My mind wandered to a passage in scripture that had always brought me comfort:

“But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies. For we who live are always being given over to death for Jesus’ sake, so that the life of Jesus also may be manifested in our mortal flesh. So death is at work in us, but life in you.” – 2 Corinthians 4:7-12.

I had always used those verses as a mantra to describe how strong Christians were, to explain that even though life on earth can be hard, Jesus’ strength is what brought us through. And while that is still true, I now have a different understanding of that passage. Until now I made that passage about us, about Christians and our ability to lean on Christ to hold us up, to build our strength, to recover from our own tragedy and give glory to God through our triumph. But now I have a different interpretation of those verses, because now I understand that it is not through our eventual triumph that Jesus is glorified, but through how we handle ourselves while in the midst of the struggle.  

Standing on that beach early in the morning looking out over the Atlantic Ocean and surrounded by “my people” is as close to heaven as I will ever experience on earth. My family is battered and we are scarred. Our innocence is gone – we are shell-shocked from the battle that was waged over the past 12 months inside our own home. My kids have witnessed things I never wanted them to see. They have watched as my heart broke, saw me become a shell of who I once was. They saw worry and fear consume me, change me, destroy me. The devil declared war on my heart and after a year in the trenches trying to protect it, I am...tired. But I am not broken. I serve a living, loving God that is bigger than cancer. He is the Creator, Redeemer, and Healer. My God is all-powerful, all-knowing, and all-forgiving. My God is sovereign and divine. My God is eternal and so is my strength in Him.  

“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” – 2 Corinthians 4:16-18

God's Goodness

King of My Heart 

Written: John Mark McMillan and Sarah McMillan

(Performed by Bethel Music)

You are good, good, Oh  

You are good, good, Oh  

Let the King of my heart be

The wind inside my sails

The anchor in the waves; Oh

He is my song

Let the King of my heart be

The fire inside my veins

And the echo of my; Oh

He is my song.

Last night, for the first and likely last time in her life, my beautiful wife Elizabeth became a Prom Queen. The BrAva MomProm is a ladies-only event the proceeds of which are used to help raise awareness and provide research funding for pediatric cancer, specifically in the Mid-Ohio Valley. Hundreds of women buy tickets months in advance, sell raffle tickets, develop sponsorships, decorate the venue, and buy luminaries with the mission of saving just one more child or preventing one more diagnosis.

Many of the women in attendance are “Cancer Moms” having walked the bleak path of mothering a child with pediatric cancer. Some of those children have triumphed and are thriving, some are still in the midst of their battle, and some now smile down on their mothers from the lap of God. Last year, Elizabeth joined this elite group of warriors against her will, becoming a statistic to some, an inspiration to others, and leader to many. Over the past 12 months I have watched Elizabeth break apart, crushed under the weight of our situation, only to dry her tears, rise from her knees, and keep fighting. Her journey, just as many others, has shaped the reality of our today with a ferocious intensity that nearly destroyed our family. But it didn’t.

Elizabeth and Hazel are the pillars of strength that sustain our family. Last night, hundreds of other women proved to Elizabeth what we have always known, that she is a warrior queen that leads our family with love, compassion, and faith.

Part of the presentation ceremony last night included a dedication to Hazel, which Elizabeth and I wrote. For those who could not attend, I have included it below. Today, and in all our days, we continue to praise God for his goodness to us.

Hazel’s Dedication:

Hazel Miller is three years old, loves the color yellow, and enjoys spending time with her family. Her favorite food is macaroni and cheese, she is best friends with her dog named Serenity, and her favorite place on earth is on a beach with sand between her toes and the salty wind in her hair. Hazel is rambunctious, rowdy, and inquisitive, with a tender love of life that stems from pure imagination and an untainted wonder for the world around her.

Hazel is just like any other three-year old, save for one thing: she has spent the past year battling Pre-B Acute Lymphoblastic Leukemia. On Easter weekend of 2017, Hazel’s world changed forever as she was diagnosed with cancer. Hazel has spent the past 12 months in and out of the hospital, withstanding round after round of chemotherapy, countless operations, and constant poking, prodding, and testing. Hazel’s cancer journey has been more positive than some, but by no means easy. She has lost the beautiful locks of bright, cherry red hair that she had since she was born. Side effects of chemotherapy have left her weak and off-balance, unable to play with her siblings or even walk at times. Her immune system has been compromised to the point of near decimation, leaving her constantly vulnerable to even the most benign germs and bacteria. Hazel has spent a year in near isolation, missing birthday parties, family get togethers, trips, and holiday celebrations. And yet, Hazel remains unstoppable. The spark in her eyes has never faded and the vibrancy of her life never waned as she has trod this difficult path laid before her.

Cancer is awful. Cancer is hateful. It doesn’t care how much of life you have lived, you can be 83 years old or 3 years old and it will still rob you of time, of happiness, and of security. Never again will Hazel’s family rest easy. Never again will a fever just be “a fever”, a rite of passage of being a normal kid. Hazel’s parents will spend the rest of their days lying awake at night worrying, praying, hoping that their little girl will have the chance to grow up to become the amazing force they know her to be.

Hazel Miller is a warrior, and like so many other little warriors around the world, she has toed the line with a hideous disease and gone blow for blow against a killer. Some battles have been won and some battles lost, but every day Hazel has had the courage to stand up and fight. The impact of Hazel’s fight has touched many; inspiring incredible acts of benevolence by organizations, groups, and individuals that far overshadow the ugliness of the disease with which she fights.

Hazel’s journey with cancer is not yet over, but today the tide remains turned in her favor. Trips to the hospital are fewer and farther between, side effects are less drastic, and her life resembles what can be termed as “normal”. Her hair is returning and maintains the deep auburn hew that was a characteristic of her appearance prior to cancer. She has faint freckles that seem to drip from her ocean-blue eyes, pointing to the dimples that pockmark her cheeks each time she grins or laughs. Hazel’s home echoes with her giggles as she once again gallops through each room with siblings and cousins at her heels, each hoping to catch her and steal hugs before she gets away.

Hazel is fiercely and recklessly loved by so many. Her life is good, her life is meaningful, and no disease – no matter how terrible – can rob her of that.

“And now these three remain: faith, hope, and love. But the greatest of these is love.” – 1 Corinthians 13:13

The Prelude

“Life has many ways of testing a person’s will, either by having nothing happen at all or having everything happen all at once.” – Paulo Coelho

“Daddy, I happy,” Hazel says as she sits quietly playing with her Playdough on a small folding table next to me. Her head bobs to a song only she can hear and her delicate little hands knead the multi-colored dough into a variety of unrecognizable shapes that come to life as elephants, puppies, and babies. Her petite little fingernails are painted deep blue and look like tiny water droplets on the tips of her miniature white fingers. “I know you are, honey,” I say as I glance down at her. Her once gleaming bald head now sprouts a tiny red forest of soft new hair that somehow looks different than the deep auburn explosion that used to cover her head. Hazel’s feet swing happily back and forth under her chair while her dark orange dress spills to either side of her on the seat. We sit together in the den, enjoying one another’s company and the opportunity to put much of the events of this past year behind us.

Weeks have gone by since I last posted, not for any particular reason or because we have been struggling. On the contrary, our time in maintenance has thus far passed gently, almost melodically (save for one short hospital stay due to a fever). I would say so far, maintenance phase of Hazel’s treatment has fully lived up to my expectations. Those who have been through this told us that once Hazel hit maintenance it would get “easier” and life would become more normal again. But life will never really be the same, it will never really go back to what it once was - carefree, relaxed, unassuming. Our life will always be tainted by this dark time, always include the word “cancer”, and always be the most poignant turning point in our time on this earth.

Hazel is doing extremely well, she is attending family get-togethers, going to church, eating out and basically living the normal life of a three-year-old, except she isn’t. She still has five medications to take on a rotating schedule at home, she still has a powerport in her chest where chemo is administered once a month, and she still visits the hospital at least once every four weeks for testing. Hazel still has to fight cancer.

A year can be over in an instant, but span a lifetime. A year ago cancer entered our life like a tornado, violently ripping apart everything that we held close to our heart. I have spent 365 days, 8,760 hours, 525,600 minutes, and 31,536,000 seconds living with cancer. It has permeated my psyche, flipped my convictions, and changed my priorities. Cancer has rocked me to my soul. I have never felt such a deep, bitter anguish as that with which I have lived for the past twelve months. I have spent every second of the past year fighting to keep my little girl. There has been no down time, no vacations, no hobbies that could truly disconnect me from that struggle.

In 2017, my family lost so much – our innocence, sense of security, best friends, and most importantly, time. But we gained an incredible strength that continues to drive us today. I have watched each of my children grow into believers, my wife thrive as a warrior, and my Hazel Basil become a force that connects thousands across the globe. The things I find most precious in my life have not, cannot, and will not be taken by cancer.

I had hoped to write a mind-blowingly thoughtful post for our one year cancer anniversary. I wanted to be able to outline the lessons we had learned, to talk about the blessings in our life, and to tie it all together with some sort of beautiful philosophic theory. But I can’t. Not right now anyway. My wounds are still too deep, the trail of destruction still too raw for me to truly reflect. Perhaps someday I will be able to string together our experiences into a cohesive deposition of struggle, heartache, and woe that was overcome by love and a never ending faith. But today is not the day; for I am far too busy living the life that my God has given back to me, to us.

My family’s story is just beginning, and 2018 is our prelude before we begin rewriting the chapters of our life. I appreciate all that have been characters in our story up to now and I am excited to see what new adventures we all will share. And Hazel, if you are reading, I am happy too my dear. 

“Love must be sincere. Hate what is evil; cling to what is good. Be devoted to one another in love. Honor one another above yourselves. Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. Be joyful in hope, patient in affliction, faithful in prayer.” – Romans 12:9-12

Teaching Them to Mourn

“You will look back on this moment of your life as a sweet time of grieving. You'll see that you were in mourning and your heart was broken, but your life was changing...” ― Elizabeth Gilbert

Amos lay prostrate on the floor of the vet office, his legs splayed out from underneath his body in all directions, looking uncomfortable and cumbersome. His breathing was labored and his head rested on his right paw, his deep brown eyes like wet circles staring up at me. His face told the story of why we were here. As I looked into his eyes I could see a faraway pain and a weariness that I had never observed in him before. His eyes were what had always drawn me to Amos. His pupils were incredibly dark, and always wide like saucers, the edges of which were tinged in a hazelnut brown that glistened in the sunlight. If he looked at you sideways, small white triangles appeared at the edge of his eyeball and gave his face a humanistic characteristic that always made me laugh. His expressions were cartoonish and he always seemed like he was smiling, always happy to see you. That was not the case now. His face was thin, his eyes somewhat sunken and dimmed, his ears laying forward as he cowered on the blanket not making a sound even though I knew his pain must be excruciating.

For nearly a week Amos had been having trouble walking, stumbling on his evening walks around Devola and having difficulty managing stairs. He had been eating less and spending more time lying in his bed listlessly during the day. It was only over the past 48 hours that he had become unable to stand up under his own power. I found him lying on the hard floor of his heated dog building, alert and seemingly eager to see me, but unable to perform his typical “greeting pounce” that I had grown accustomed to. Amos’ quick deterioration had prompted us to take him in for a checkup to see if we could get him some medication for what seemed to be hip and joint pain. Unfortunately upon examination by the vet, Amos’ condition was found to be much more than simply getting old.

Hot tears streamed down my face as the vet explained the grim news of her exam. Amos had lost considerable muscle mass in his hips, shoulders, and back, while his stomach region seemed to stay the same size. On the scale he was only a few pounds heavier than when he was neutered seven years prior, a time when he was much younger and much smaller in stature. From all initial signs, Amos was fighting something internally, something that caused rapid, drastic physical changes that at this point were probably irreversible, and maybe impossible to combat.

I stared blankly into the distance as the vet’s voice sounded hollow and tinny in my ears. She suggested a blood test and I complied, barely noticing as she took the blood and walked out of the room to prepare the instruments for the test procedure. This scenario felt all-too familiar and a little too “real”, taking me back to that fateful day in April during Hazel’s diagnosis. I had sat in a cold hospital room staring blankly at a wall awaiting her test results as well, her limp exhausted body cuddled tightly in her mother’s arms as they tried to nap and await the news that would change our life forever.

I stroked Amos’ head and he looked up at me, his beautiful brown eyes eager, but tired, hurting. He nuzzled my hand and leaned heavily into my petting, focused on showing his humans love and compassion even as he lay dying in front of me. I reminisced about the first day I had found him, a young pup wandering in the woods alone, destined to be coyote food if I had left him. He was always long and gangly, with paws that seemed too big for his body and a long, galloping stride that reminded me more of a horse than a dog. I looked at him now, skinny, shaking with each breath, suffering. The pieces of my heart left after 10 months of fighting Hazel’s cancer continued to crumble as I realized I and he were going to lose this battle.

The vet came back in with a sullen look, shaking her head and nearly in tears. She knew us, knew our dogs, knew Hazel, and was so very compassionate for the gravity of the situation.

“I am so sorry. You guys don’t deserve this,” she said quietly. “The results are not good. His kidneys and liver are failing. He is likely fighting some type of blood disease or massive infection that stems from within his body.”

She took a breath and watched as I dropped my head, pausing before she continued, “The treatment we would need to give him is a high dose steroid…”

I chuckled through tears, “Ha, yeah. That likely requires high liver and kidney functions to process the level of chemicals in his system, right?”

“Yes,” she said. “With his current level of damage, the medicines we would give him would likely kill him in the process.”

And so there it was. The reality of what was happening came full circle and nearly smothered me in its heavy consequences. My youngest daughter had just spent 10 months fighting for her life against a blood disease that dismantled her immune system. It was treated with heavy doses of steroids that constantly assaulted her kidneys and liver with high concentrations of chemicals. We had just celebrated her transition to maintenance phase one day prior and had been able to breathe a tentative sigh of relief knowing that she would now suffer fewer surgeries, have fewer side effects, and less pain. Hazel was improving and by all accounts seemed healthy again. I thought things were getting better. I thought 2018 was going to be a better year. But now I was catapulted back into the same vicious cycle I had just left. One of my friends lay on the floor in front of me, part of my family for nearly a decade, and I was unable to help him, unable to save him from the monster that coursed through his veins. Momentarily I was overcome and unable to speak for fear of completely falling apart in front of the vet. She let me grieve as best I could before I spoke again.

“I know my options here,” I said, “I don’t want him to suffer.” I looked at Amos as he turned his head toward my voice. I imagined what the treatment process would look like, the medications, the getting worse before he could get better, the sadness, the heartache.

“I’m just not sure I can do it again,” I whispered, almost to myself more than anyone else.

The vet, understanding my turmoil said I could take some time if I needed. But I didn’t. My decision was made and now was the time. I needed to end his pain. I called Elizabeth and told her. She and the kids showed up at the vet office within minutes. Each of my precious children had spent their entire lives knowing Amos as the gentle giant, their constant protector, and now were ill-prepared to say goodbye to him. My entire family filed into the small exam room and huddled around Amos like a wall of love, the entirety of his life’s work surrounding him as he lay motionless on the floor, save for his incessantly wagging tail and his expectant eyes looking up at us.

We were a mess, not a dry eye among us and with little dignity to be had as we each wept over our family pet. My kids each dealt with it in their own way, Gideon and Aurora sobbing loudly and uncontrollably, Paul only allowing single alligator tears to escape from the corners of his eyes as he petted Amos’ head one last time. Hazel, Amos’ newest friend and daily charge knelt down in front of his nose and stared deeply and earnestly into his face, their eyes locked for a moment of communication that only they could understand. Elizabeth and each of the kids said their goodbyes to Amos and then allowed their tears to spill anew as they hugged me and walked back out the door. Amos was “my” dog; this was to be my time with him.

We moved to another room connected to the lobby that was more private and had a small couch in it. The vet and her assistant placed the IV in Amos’ front paw and gave him a small amount of sedative to help him relax, then left he and I alone for a few minutes. I stroked his head and smoothed his ears, speaking to him softly and gently, “You are a good boy Amos. You always were. I’ll miss you buddy, but we will be ok. I’ll take care of them and we will be fine, ok? You can let us go.” His brown eyes burned a hole in my face, and somehow I knew that he understood.

The vet and her assistant returned, delivering the final medication that would mercifully stop Amos’ heart and allow him to rid himself of the pain he had been in over the past months. I was with him to the end, stroking his fur, crying, and offering what solace I could so he would not be afraid to face what was coming. It was over in an instant, the end to a long friendship and sense of dependency built on trust, a life having been snuffed out by disease, but memorialized by the happiness of being together.

While only a dog, Amos was still a life and one that meant a great deal to my family. We spent 10 years of our life with him. We graduated college, landed and left jobs, bought a house, and had babies that grew into children. We spent “life” with Amos, having saved him from certain death as a puppy in the woods and we all spent his last moments on earth by his side comforting him as he slipped away. I can only hope that I have the same fate someday, slipping into the arms of my savior as my loving family surrounds me and assures me they will be alright without me.

Elizabeth and I struggled with Amos’ diagnosis, but we struggled more so with how to break the news to our children. My kids have had to deal with more than their share of harsh realities this past year, and we were not excited to have to deal yet another devastating blow to their emotions. We could have kept it from them until after Amos was gone, we could have told them and not taken them in to see him, or we could have tried to hide his passing from them completely. But we didn’t and I am glad.

We brought our kids to say goodbye to Amos to allow them the opportunity to grieve, to teach them how to mourn loss, and to help them understand how to recover from heartbreak. Was it tough? Heck yes it was. For as much as I thought my heart was broken when I knew Amos couldn’t be saved, it broke all the more to watch my children wallow in their own anguish at the same realization. But when I saw them faltering, I grabbed them and hugged them tight, drying their tears and standing strong when they couldn’t.

My children will grow to know that sometimes life is a tragic medley of sad and joyous occasions, woven together in a melodic symphony spun together by time. The harsh realities of this world will catch up to my kids whether I want them to or not. They will see and feel pain, they will witness injustice, their hearts will be broken. My only job, the only one that matters anyway, is to make sure they are prepared to take these evils head on, guided by God’s light and shielded by his protection. I want my kids to see me hurt, I want them to see me struggle, because I also want them to see me triumph. Life is finite and it is ended by death. But new life is precious and something to be cherished. 

Last week as one flame that had burned bright in our life for 10 years was extinguished, a new one was lit. Like an ember blown into a ball of dry tinder, a tiny flame of hope was kindled. On the very night that my family was mourning the death of our longtime furry friend, we received word that a new cousin is to join us in 2018. And while this news did not totally eclipse the sting of Amos’ passing for my kids, it did bookend the life lesson of the cycle of life and death. Like the strong little warriors that they are, my kids dried their tears, picked up their broken hearts, and rejoiced.

Our daily walk as Christians is not easy, it is not simple, and sometimes it nearly breaks us. But our God knows when and how to provide the silver linings that we all yearn to find. He knows our hearts and our convictions, no matter how little we are. Today I will teach my children to mourn, because tomorrow I must teach them to lead.

“The Lord is close to the brokenhearted and saves those who are crushed in spirit.” – Psalm 34:18

The Two Visitors

I sat in stunned silence with my elbows on my knees, head resting heavily in my open hands. I breathed in deeply and held it, completely filling my lungs in an attempt to calm my nerves and re-center my thoughts. It didn’t work. I looked up and said in a hoarse, desperate whisper, “Are you sure?” The doctor knelt down in front of me and gently took my hand in hers, “The test coming back on Monday only tells us which type of Leukemia she has, but we are sure that she has a blood cancer. I am so sorry.” I looked away, tears streaming down my face, my shoulders heaving with each deep sob, my heart…broken.

Moments ago every muscle had ached with exhaustion and every fiber of my being was beset with fatigue, but that had melted away now, leaving a numb emptiness that swallowed me entirely. The utterance of a single disgusting word had just shattered my spirit and filled my world with a swirling darkness that shrouded everything around me. I was almost too exhausted to process the news.

It had been nearly 36 straight hours since we had entered the emergency room, and I had not yet slept. We had spent that time struggling to get Hazel stabilized. She had arrived with platelets so dangerously low that just holding her caused bruising and the doctors warned us that she could have spontaneous bleeding on the brain without a transfusion. Her veins were so fragile that every time an IV was placed, it would blow out within seconds, leaving her with bruised puncture marks in both hands, at both elbows, both wrists, and both ankles.

Mercifully, one of the IVs finally held and Hazel was given bag after bag of platelets and red blood cells. But the hours of screaming and crying and fighting had taken its toll. She and Elizabeth were totally exhausted and had fallen into a fitful sleep. They had each poured every ounce of emotion and strength into getting through the night and could do no more.

Tired though I was, I remained awake, sitting, standing, sometimes kneeling next to the hospital bed, watching my little girl fight for her life in the arms of her greatest protector. I prayed through tears for so many things during those early hours. I prayed that we were all wrong and Hazel was going to be fine. I prayed that tests would come back with good results. I prayed for Hazel’s pain to stop. But most of all, I prayed to God to save my little girl, to allow her to live, even if it would mean that I didn’t. “Please God, remove this burden from her. She is so young, has so much more of life to live. Why can’t it be me? Why not me!?”

The answers to my prayers were not what I expected, nor were they what I wanted, but I know they were what I needed. The doctors eventually left that day and Elizabeth and I began to grieve together, sometimes in unison, and sometimes on our own. We didn’t talk much; there just wasn’t much to be said. We cried for hours, silently sitting and staring into space in a near comatose state, as aware of the presence of other human beings as a tree is to a rock next to it. Darkness finally fell and the constant stream of visitors revolving through our room slowed.

Sometime in the middle of the night I heard our door creak open and a man’s head poked through the opening.

“I am sorry to bother you, but may I come in?” he said.

“Sure, but my wife and daughter are sleeping.”  

He whispered, “Oh that’s ok, it’s you I want to see anyway,” closing the door behind him.

I studied his figure in the dim light. Something about him seemed strange but I couldn’t put my finger on it. He was tall and slender, his head nearly touching the doorframe as he slid into the room. His shoulders were wide but hunched forward, like he had been working at a desk for too many years. He was dressed in what appeared to be a dark blue suit and looked very professional, more like a banker than a hospital employee. His black leather shoes squeaked when he walked and his hair was slicked back against his head with a heavy smelling balm. His face was friendly enough, but seemed ashen and though his lips were formed into a smile, his expression made me uneasy.

He came further into the room and stood on the side of the bed opposite of me, placing his hands behind his back and pushing out his chest. His presence was icy, and it seemed as though the temperature in the room immediately dropped a few degrees.

“I was sorry to hear that Hazel had cancer,” he said, the words nearly dripping off of his lips.

“Thank you. We are still trying to process what this all means,” I said.

“I am sure you are. It is quite a blow to be dealt. No one wants this.”

I stared down at Hazel lying in the bed, her red locks curling around one of her tiny ears. “I certainly didn’t,” I sighed.

“Doesn’t it make you mad?”

I crinkled my brow and looked up into his face which was now formed into a quizzical, almost feigned sense of sympathy. “Mad?” I said, “Of course I am mad. I am so angry that I can barely see straight. I am furious that she is lying there and I am not. I am livid that as humans we are so vulnerable to so many diseases. I am mad at myself for not protecting her, mad at the evil that exists in this world, and downright irate that I cannot change anything about this situation.” I took a breath and realized my hands were clenched at my sides and I was leaning forward. Was I mad? What kind of question was that? Who was he to ask me that? “Are you with the hospital or insurance or what?” I said.

He had visibly enjoyed my reaction and, ignoring my question, pressed further, “And? Aren’t you mad at someone else too?”

I shook my head in a jerking motion, “I don’t know…”

“Yes you do, I can see it in your eyes. Who are you mad at?” he said, his voice rising slightly as he anticipated my answer.

In an instant I got it. “Wait, do you mean am I mad at God?” I said.

“I know you are, you have to be,” he said.

I looked away from his face, ashamed by the accusation. The truth was I was so angry I was shaking, but I didn’t know at who or at what. No one had caused Hazel to get cancer, nor had any single event brought it on. How could I be angry at a situation? Wasn’t that more frustration and helplessness than anything else?

“I can’t be mad at God. He didn’t cause this,” I said.

“Well how are you so sure? Don’t you believe he is all-powerful? That he has control over all of us and our lives here on earth?”

“Yes, I do, but I don’t believe he causes pain,” I stumbled.

“He most certainly does. Or at least he allows it. I mean look at Hazel. You believe that he could at any point heal her, right? Well then why would he let her be in pain like this? Why would he allow loved ones to die when it hurts so much?” he hissed. His movements continued to make me uneasy. He seemed to glide along like a snake, bobbing in toward my face, closer and closer. He was close enough now that I could see into his eyes. They seemed unnaturally dark and round, with a piercing stare that penetrated deep into my soul.

Defiantly I glared back at him. “I am confused, hurt, sad, angry, and hopeless. I am in so much anguish that I don’t know exactly what I feel right now, but I know one thing: My God is a God of love. He did not cause Hazel to be sick to punish her or me and he has a plan for us. Am I scared of what that plan holds at times? Yes, I most certainly am. But I never question that plan because he put the stars in the sky, the dirt under my feet, and breath in my lungs. His plan is my plan, and I accept that.”

The man’s demeanor immediately changed as I spat the words into his face. He no longer had a semblance of comfort, but instead lifted his body to its full height and screamed, “Ahhhh, how can you still cling to your silly faith!? Look at what your morals, honesty, and truth has gotten you. You are going to lose her, you know! Hazel, your little girl is going to die, and you can’t stop it and neither can He.” The room darkened in that instance and a great rush of wind filled my ears. The man began to contort into a black grotesque shadow, his thin fingers gnarling into talon-like appendages. His facial features began to melt away into a gray abyss that swallowed up what light was still left in the room, his black eyes staring down at me icily.

I was terrified of whoever this was, whatever this was. I felt frozen, my feet cemented in place by fear, leaving me totally exposed to whatever was to come next. I half-crouched and cowered with my hands over my head, barely glancing up into the face of this monster that had taken over our room.

Suddenly the howling wind stopped and light began to flood the space. I opened my eyes and realized our door had been opened and in the bright rectangular silhouette I could see the figure of a man. He was about my height and stocky, wearing a pair of dark blue pressed jeans and button down striped shirt.

“Is everything alright?” the man asked as he stepped further into the room. I slowly lowered my hands and looked around. The shadow man was nowhere to be seen and I was alone in the room with the new man and my tiny sleeping daughter. “I guess so,” I stumbled, still confused by what I had just witnessed.

I glanced over at blue jean man and saw he was about 50 years old with what can only be termed as a kind face. He was clean shaven, but with stubble as if he had not shaved in a day or so. His clothes were well kempt but not flashy and while he was not tall, his barrel chest and upright stature made his presence seem much greater than his overall height.

“She is beautiful,” he said as he stared lovingly down at Hazel. His voice was warm and strong-sounding, but not loud. Authoritative I suppose is the right word. “I love that red hair,” he beamed as he looked over at me. I looked into his face and something about his eyes caught me. His face was smiling, but his eyes had a look of weary despair in them, like a pool of water so deep that the light cannot penetrate all the way to the bottom. I wondered what his story was, what caused that despair I saw in his eyes. No one comes to Nationwide Children’s Hospital for the heck of it. He too must have a child here.

“Everyone loves that hair,” I say, “It’s just too bad she is going to lose it.”

“It will come back,” he says with such comfort and certainty in his voice that I immediately believe him. He reaches down and caresses Hazel’s head and she leans into his hand with a slight grin on her face, turning slightly as she sleeps.

“It’s an awful thing you know, cancer,” he whispered. “It causes so much heartache in this world. I am truly sorry that you and your family have to go through this.”

I could hear a distant pain in his voice and I thought I noticed him catch his breath at the word “family”.

“Thank you,” I said, “I don’t know how I am going to handle it. I am so…”

“I know,” he said as he looked me in the eyes and placed a hand on my shoulder. “You are afraid. Afraid to lose her. You are afraid you aren’t strong enough. You are afraid of the struggle.” Tears rolled down his cheeks and I felt my own eyes warming as they filled with tears of my own.

“You are afraid that this experience will tear you and your family apart,” he said in a hoarse whisper. “I know all of that. I feel all of that too. I know your pain all too well.”

My kind visitor turned his head back to Hazel and wiped the tears from his creased cheeks, but his hand remained on my shoulder. We sat together on Hazel’s bed, grieving together in knowing silence. Our hearts were broken, torn apart by the pain we had and were still destined to witness.

I said, “I don’t know how I will do it, how to do it, really.” I dropped my head again, but a strong hand caught my chin and pulled my face up close to his own, this man that I had seemingly befriended in a mere five minute conversation.

“You are stronger than you could possibly know. Your family is strong, Hazel is strong. Your souls are tied as one and you will get through this, I promise you.”

“But how do you…” ,I stumbled.

He shook his head and cradled my face in his hands, drawing me close into an unexpected, but welcome embrace. “Because I have been here, I have seen this before, and because I am here now,” he whispered into my ear.

We stood up and I backed away from him with a quizzical look on my face.

“So do you have a child here?” I said.

“Yes I do. My children are here.”

“Children? I am so sorry, what rooms are they in?” I said.

The stranger smiled, backing toward the door now, intent on leaving when I still had so many questions.

“My son,” he laughed, “they are in every room.” And just like that, he was gone and I was left standing facing a partially closed door, my daughter sleeping soundly in her bed, my wife cuddled up next to her.

These events as I describe them may be fictional in nature, but are true in their message. I was visited by two beings that day, what forms I couldn’t tell you, but they were as real to me as any person I have ever met. These beings made their presence known not because I was at my strongest, but because I was the weakest I have ever been that day. On that day I was given a choice, to listen to the legions of evil that screamed at me to run, to give up hope, to allow my faith to be destroyed by situations on this earth. Or to listen to the One who is all knowing, all powerful, and everlasting. I sat poised on a razor’s edge decision, knowing full well it would shape the rest of my life. As we continue on in Hazel’s journey, I know that I made the right decision.

The forces of good and evil walk the wards of hospitals, wafting in and out of people’s lives like a mist that either breathes new life into you or steals your soul when you least expect it. Over the past year, my heart has become a trodden battleground, filled with the weariness and despair. The intermittent joy that is provided by Hazel’s smile, the little dimple in her cheek, a twinkle in her eye, or her infectious giggle has kept me sane. It has provided the strength I needed to know that she is in God’s hands. She has walked with Him, been held by Him, and protected by Him during this time of terrible tribulation.

As I sit in the lobby of NCH now, waiting for Hazel’s day to ring her bell, I know that my God, the one true and loving God, walks those halls daily. He checks on his children, comforting them, rejoicing with them, and mourning their suffering just as their parents do. This life is not simply a test of our faith, it is a testament, and I want my testament to be written in the scrolls of history of having been for Christ in all of my days, not just the good ones.

“Be joyful in hope, patient in affliction, faithful in prayer” – Romans 12:12

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