The Passing of Time

It has been said, 'time heals all wounds.' I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone. ― Rose Fitzgerald Kennedy

Time is an ever-fleeting commodity, a proposed theoretical record, a temporal measure of our existence on this earth that can be experienced by individuals as well as academically understood on a worldwide community-based level. We each experience our time differently. Time does not change. Minutes do not speed up or shorten, time is not lost, nor is it stolen from us. Time can feel limitless, stretching across an immensity so consuming that a second can seem to take forever to pass. But time can also be so transitory that a year can feel like a single passing moment.

We all have the same number of hours in a day. No one has more or less time than anyone else from a scheduling standpoint. It’s easy to think of our “time” as simply the days, weeks, and months that are filled with jobs, parties, hobbies, responsibilities – the things we put our efforts into to create a “life”. But what is a “life”? What does it mean to live? I think it means to be grateful, to celebrate, to rejoice. I think it means to experience as much goodness as we can on this earth. I think living means to enjoy our blessings, to love our family, and to draw closer to our friends.

Hazel’s battle with cancer continues to teach me many things. Since her diagnosis, I have seen my young daughter in a new light. I have first thought of her as a cancer-stricken victim, fighting for her life in the direst of circumstances. I then saw her as an inspiration, a fighter, a warrior impervious to the struggles that she faces every day as her treatments continue. But today I see Hazel much differently.

Hazel is now my teacher, a sage mentor that delivers lessons not through what she says, but through her actions. At just 2.5 years old, Hazel has already experienced more than I have in my 34 years. She has seen more specialists, undergone more medical testing, and fought more battles than I have. Her pain has been greater, her tears richer, her struggles more relevant. And yet, her joy and love of life continue to bubble to the surface, overpowering all the sadness that surrounds her current situation.

Hazel remains an enduring testament to thankfulness, childlike wonder, and grace while dealing with a terrible, life-threatening disease. Hazel has shown me what it means to be created in God’s image. She laughs, dances, and giggles often. She loves fiercely. She is compassionate, she is empathetic, and she is trusting. She is, perfect.

Over the past months, I have said “Cancer teaches me this” or “I have learned this from cancer”, but that puts my focus in the wrong direction. I have for too long thought of cancer as the biggest concept in this struggle. The reality is, cancer has taught me nothing. Cancer is nothing. Cancer just happens, it's a disease, a meaningless biological change that affects a human body, but cannot touch the human spirit. Hazel has shown me that, and I will forever be humbled because of it.

Hazel has taught me to trust in what we cannot see. She has taught me to love deeper, rejoice more fully, cherish what I have, and to be ever faithful. Hazel has done this, NOT cancer. Because for all her pain, all of the anguish, the confusion, and the doubt Hazel has not once acted like a victim of her circumstance. She has not mourned, she has not complained, and she has not given up. I owe it to her to do the same.

Hazel has taught me to aspire to faith that can move mountains. She remains patient, focused, driven to live life and to love it regardless of the obstacles in front of her. At times, I see so much of God’s hand in her that I am overcome with emotion. It’s as if her struggle has awoken my spirit, set something astir inside of me and I am restless. I am charged and empowered, liberated from the shackles of everyday life because my goals are so much greater than this world can fathom.

Hazel has shown me who Jesus is through her and for that I am forever in her debt. She has taught me that time is precious, yet meaningless all at once. The amount of time we have on this earth means far less than what we do with that time. Tomorrow is not guaranteed, for me, for you, or for Hazel. But today can be great, and it’s up to us to make it that way.

Jesus Christ is the same yesterday and today and forever. – Hebrews 13:8

A Letter to the Church

Over the past few months my family has witnessed what it really means to belong to and be loved by a church. Our church is not just a place or a building - it is people, it is you. Our church is made up of all of the people that love us, support us, cherish us, and encourage us. This past weekend was the first time in a very long time that Hazel was well enough to attend our home congregation. During that service a letter I wrote was read allowed. On the same day, in several other congregations across two states, similar letters were also being read. We have never personally attended services at some of these churches, and yet we still consider them our church, THE church.

My letter is below. It is addressed to our beloved church family, which includes all those reading these words today. Without you, we would be lost.

To Our Dearest Church Family,

I have struggled to write this letter, not because I do not know what to say, but because there is so much to say. How is my family to portray to you our thanks? How do we show you the level of love you have shown us as our hearts were stripped and laid bare through a fight with an invisible foe? How can we possibly show you how much we have been strengthened and emboldened by your kind words, phone calls, visits, donations, and most of all your prayers?

A simple letter and some written words do not seem in any way sufficient to communicate our gratitude to you for what we have felt from this church family over the past months. But as I sit writing this letter, I am reminded of the parallels I share with Paul as he wrote to the churches in Rome, Corinth, Galatia, and Ephesus. Paul was charged with a task larger than life, one that would shape the course of history and span centuries as he founded, encouraged, and strengthened churches throughout the world, often times solely through his written words. God used Paul’s words and his life experiences to unite Christians throughout time. Words are powerful, words are moving. Words allow us to connect this physical world to the emotional realm that only exists in our hearts and minds. And words can be used by our Savior Jesus Christ to change the world. It is my hope that from these words and through our story, God encourages you all today.

First and foremost, our God is the eternal healer, the Great Physician, the beginning and the end; our God is everything good in this world and the next. He protects us, provides for us, comforts us, and knows all things about us. God knew that one day Hazel would be faced with the horrible disease that is cancer. He knew she would begin her battle this year and only He knows when and how that battle will end. I take solace in the fact that our God is a merciful God and that he has a plan for our family and for Hazel. We trust his grace in the trials that we currently face and keep Him as a rock in our hearts as we continue moving forward on the path toward recovery.

Many of you know us and even more of you at this point have probably heard of us, but there are still some that may not see all that we post online, therefore I will provide a short update on Hazel’s progress thus far. At just two years old, Hazel has been diagnosed with Pre-B Acute Lymphoblastic Leukemia, which is just a fancy way of saying that she has cancer that affects how her bone marrow makes blood. We praise God every day that Hazel’s particular type of cancer is curable and while her fight is far from over, she has progressed through treatment exceptionally well. She is currently four months into a 2.5-year treatment program that is made up of several phases of chemo treatments with varying intensity. She has undergone several lumbar punctures, an 8-day hospital stay, ER visits, and countless drips of chemo thus far, yet remains as resolute as the day she was diagnosed. She is the strongest person I know on this earth, except for maybe her mother who has been there to hold her for every blood draw, every port access, every surgery, and every chemo delivery she has ever gotten.

Our days aren’t always bad, but they aren’t always good either. Sometimes Hazel doesn’t feel well or her white blood count is too low for us to go out and socialize very much. Other times she is just as boisterous and active as any other completely healthy two-year old and would rather run around outside than be stuck in the house all day. We have to pay special attention to keep her from getting sick as her immune system is often too compromised to fight off even the common cold, but in large part, we have been able to return to a fairly normal everyday routine. About once a week we travel to Columbus for her ongoing chemo treatments and once a month she has a procedure to insert chemo into her spinal fluid via a large needle. Most of her side effects at this point have been manageable, but we do keep an eye out for fevers, sores, or anything that may lead to infection as even the smallest cut could lead to another ER visit and more antibiotics.

Thus far Hazel has progressed exactly how the doctors say she should. She officially achieved remission and was free of all cancerous cells by the end of the first month, which is a very positive sign for her overall prognosis. Our hope is that she will continue to respond positively and be moved into the “Maintenance” phase of her treatment sometime around the end of the year.

Life with childhood cancer can be difficult. Upon Hazel’s initial diagnosis, Elizabeth and I were devastated; absolutely rocked to the foundation of our souls. We cried every day for weeks, not always because we were afraid of losing Hazel, but just because she had to go through all of this. We asked why it had to be her? Why not one of us – if only one of us – instead? She seemed so frail, so fragile as she laid in the hospital bed for that first week, receiving dose after dose of high-intensity drugs designed to help her body wage war on the infringing cancer cells. I have never in my life prayed with more intensity or more often. I found myself praying for even the smallest of victories, hoping to see just a glimpse of improvement each day, which turned into each week, and now each month.

But God knows the pain I and my family are going through. He hears our prayers, acknowledges our lament. I no longer cry every day, but it’s often. I don’t cry out of self-pity or sadness, I cry for what once was and is lost. I cry for my wife, I cry for our kids, I cry for our parents, I cry for Hazel. The pain of watching one of my own, so little, so helpless stuck in the fight of her life is at times unbearable. Much of Hazel’s childhood innocence will be lost in this battle. She will grow up knowing so much more of hospitals, doctors, surgeries, and sacrifice than any two-year old should ever have to. Her summer weeks have been spent traveling to a city we have come to know and a place we have learned to love, but there have been no beach vacations, no dancing in rainstorms, and making mud pies in the back yard.

Our mourning of Hazel’s situation often leads us to think of others who have been touched by cancer as well. During our visits to Columbus, we are surrounded by other families struggling with their own cancer journeys; so many people hurting, so many people struggling to make sense of everything they are going through. In our local community, there are those that have suffered so much longer than we have and still have much longer to go in their battle. Of course we also always think of our church families who have lost loved ones after years of long, hard fought battles with cancer.  Many cases do not have a prognosis as positive as Hazel’s, and we are oft reminded that while we may be hurting, there are still others that have suffered even more than we have.

This is a terrible experience and not one that we would have ever wanted, but through our battle with childhood cancer we have come to appreciate some of what the situation has given back to our family as well. We are given infinite opportunities to see God at work in our lives. We have experienced a tremendous outpouring of love that is as overwhelming now as it was when this journey began. So many people have reached out to us that there is no way to thank everyone for what they have done. We are humbled and filled gratitude for all of the meals, cards, visits, signs, and support that you have provided. You have touched our lives in immeasurable ways and we have seen God’s work through your hands.

Our family is surrounded by a cloak of compassion that swallows up much of the sadness that could fill each day. We know that this is God’s presence surrounding us, protecting us, sheltering us in the storm. Too many times to count we have been teetering at a depressive precipice, ready to plunge forth into another dark valley when a kind word, card, or simple act of kindness has turned our day around. These acts of love are the breadcrumbs that string us along in our everyday walk and we will always and forever be in your debt for providing them.

Christ is at work in our life, now more than ever, and we recognize and cherish the opportunity that this provides our family. Hazel’s pain is temporary, our anguish fleeting. Our experiences now are forging us, strengthening our resolve. With every new challenge and every struggle, we adapt, we overcome, we thrive. Our time on this earth is but a moment in the eternal life that God offers us as Christians. Some parts of that moment are hard, and others are full of joy, but it is all a gift from God.

So as I close this letter, brethren, I urge you to take heart. Be strong, be courageous. Love passionately and guard your hearts against the evils of this world. Do not be downtrodden for our journey is not over, our battle is not lost. The forces of good continue marching forward at a steady beat, shielding those that need protection and strengthening those that are weak. Hazel’s walk with God has only just started, but I am excited to see where it takes her and us from here.

“Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” – Philippians 4:4-8

In Christian Love,

Nat & The Miller Family

A Special Place

“Bye hospital, I lub you.” These are the words that Hazel softly uttered as we rounded the corner on Livingston Avenue and passed the Nationwide Children’s Hospital sign. I quietly fought back tears as the irony of the situation settled deep into my psyche. Her voice dripped with a level of sincerity that I do not often hear from adults – let alone a two-year old – and while she was smiling as she said it, I could hear the gentle sadness that accompanied the phrase. Her intentions were genuine; she does love that hospital and the people that work within its walls. She doesn’t love the mini-marathons of blood tests, accessing and deaccessing her port, chemo drips, belly palpation, and lumbar punctures – the actual fight against cancer. But she does love the hospital for what it represents: hope, life, vitality, and the fight for good.

Nationwide Children’s Hospital is a special, almost spiritual place, and it holds a hallowed position in my family’s hearts. As soon as you lay eyes on this facility, you can tell something is different about it. From the outside the 12 stories of glass windows loom high above the surrounding buildings in the Columbus skyline, appearing cold, foreboding, and intimidating were it not for the light blue and orange butterfly logo that is delicately perched on the uppermost floor. The campus sprawls over several city blocks and is always bustling at any time during the day or night. Gaggles of world-renowned surgeons, doctors, researchers, and nurses hustle along the flower-lined concrete corridors with purpose; focused on an invisible goal that only they can see. The landscaping is beautiful, incorporating a variety of vibrantly colored flowers and exotic grasses that add light to the otherwise bland city landscape that surrounds it.

The main building sits adjacent a park replete with bright red and blue playground structures, swings, and picnic tables. Green metal benches are spaced periodically along the perimeter and are nearly always filled. Parents, grandparents, aunts, uncles, cousins, sisters, brothers; all families in the midst of their own personal stories, use these outside spaces as a place of respite from the realities that exist mere feet away inside the doors of the hospital.

The hope is that you never have to enter that hospital, but if you do, what greets you is nothing short of spectacular. The interior is cheerful, with walls featuring murals of various nature scenes including frogs, turtles, grasshoppers, and butterflies; floors that use wavy, colored paths to help guide you through the facility depending on department. Colorful bird figurines are suspended from the ceilings, chirping as you pass underneath and trip their electronic motion sensors. As you walk down the hallways you are greeted by six-foot tall wooden bunny rabbits, bears, and tortoises wearing hats. There are two giant, pristine aquariums – one of which is a full 360-degree cylinder – filled with all types of aquatic life. The “magic forest” has huge hollow trees for games of hide and seek and a reading nook cut into the wall where kids can curl up with one of the hundreds of free story books available on the donated book cart.

While much can be written about the decorations, architecture, and layout of Nationwide Children’s Hospital, the most important parts of the hospital – the most valuable assets – are the people employed there. Hazel has never been treated like just “any other patient” by the NCH staff, she has been treated like the ONLY patient. They have seen her as who she is, a special redhead that is smitten with an ugly disease and fiercely loved by many.  

Since the very first time we stepped across the threshold in the ER, every staff member we have met has had a special “spark”, an aura that is difficult to explain but easy to recognize. It’s more than loving their job or having good bedside manner, it is a calling; a deep-seated compassion for children that comes out in every action, every word, every touch.  Everything they do is to help save our children. These people work tirelessly – day in and day out – to save precious young lives. The loving look in the eyes of the NCH staff and the soft tones of voice they use to speak to Hazel are surely God-given and must be how Jesus spoke to the small children that came to Him in Mark 10:13-16.

“People were bringing little children to Jesus for him to place his hands on them, but the disciples rebuked them. When Jesus saw this, he was indignant. He said to them, “Let the little children come to me, and do not hinder them, for the kingdom of God belongs to such as these. Truly I tell you, anyone, who will not receive the kingdom of God like a little child will never enter it.” And he took the children in his arms, placed his hands on them and blessed them.”

Many times over the past four months I have been brought to tears by the empathy that our care team shows. NCH has treated Hazel Basil as if she is precious, a special gift to the world, a treasure. Our treatment team has fought for her, cried for her, celebrated her victories, and mourned her losses. They have held us as we’ve wept, reassured us in our concern, and provided advice in the darkest times of our lives. They have seen us at our most raw, watched as we were stripped of everything that mattered most in our lives, and have helped pick us back up as we learn to live with the new normal that is our life. These are our people, the ones that saved Hazel. The ones that cared for her from day one and continue to care for her today. The bond we have created is not soon broken because they are more than staff, they are family.

Everything about NCH is designed to be welcoming, comforting; to promote a sense of wonder and imagination. To make us believe in magic, to look behind leaves for fairies, to believe we can fly. NCH reignites the spark that used to burn deep inside each of us as children. The sense of adventure, the idea that anything is possible, a feeling of hope. Hope that what we see around us is not all there is to this life. That the hate, the pain, the grief that fills so much of today is not what we were put on this earth to experience. NCH recreates the world that our children see every day. One in which race, creed, religious affiliation, or political party does not matter. One in which the fight for life, the fight for good, outweighs the forces of evil.

Our society is in turmoil. Racism, bigotry, and hate still exist, far too often taking center stage over the good and righteous acts that surround us each day. Nationwide Children’s Hospital reminds me that there are still lots of good people doing amazing things in this world. It reminds me that lives can be saved, eyes can be opened, and minds can be changed. NCH gives me hope, not just that we can save Hazel, but that we can save the world too.

“The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy.” – Martin Luther King, Jr. 

A Dad by Any Other Name

"To her, the name of father was another name for love." – Fanny Fern, Fresh Leaves

“I lub you Daddy,” Hazel yells over her shoulder as her mom pushes her little pink tricycle in a meandering circle around the empty parking lot for what seems like the millionth time. I grin in the dark as she giggles and babbles away, listening to the stories that can only be told by a 3-year old girl entrenched in a make believe world. Hazel is filled with wondrous joy as she explores every inch of the parking lot. The warm breeze blows the small tufts of hair off of her forehead and her light blue sundress dances behind her like a small rip curl following the wave that just flowed through a calm section of ocean water.

Its 10:00pm on a Tuesday evening and yes, our daughter is playing outside. Her medication reacts with sunlight and gives her bright red hives on her skin if she plays outside during the day, so we are obliged to play late at night after the sun sinks low behind the horizon. Our street is quiet and the night sky looms overhead, dark and expansive with small pin pricks of light that indicate where stars would be visible if it were not for the light pollution of street lamps lining the streets of downtown Marietta. I lean back and peer up into the darkness and let my mind wander.

In the short span of about 30 seconds, my thoughts come as a revolving door of checklists: “I need to get that manual done at work so I can move on to the training content that needs developed; Do I have any freelance projects to work on tonight?; How much money is in the bank?; What bills need paid tomorrow?; What is our schedule like tomorrow night?; I need to paint the house; My truck needs some work; I should probably try to workout sometime; When do we go to Columbus again?; I hope Hazel’s numbers improve; Are we doing the right thing; What am I forgetting?” Each additional thought gets stacked on top of the previous ones, like a precipitous tower of cups, each filled to the brim with information, swaying back and forth sloshing their contents out a little at a time. As the tower builds in height, I struggle to maintain its balance, and often fear that my focus on the cup on the top will cause me to trip over the smallest imperfection in my path below, burying me in a torrent of broken cups and lost causes.

It has now been over two weeks since we last visited Nationwide Children’s Hospital in Columbus. Two weeks of no procedures, minimal medications, and fairly normal life. Beyond a few visits to local medical facilities for blood work and eye health checkups, we haven’t even thought about visiting a hospital. Hazel is off of all oral medications now except for one on the weekends and our next scheduled clinic visit isn’t until the end of this week. She has done amazing, is walking around, plays nonstop, sings, dances, and laughs all the time. By all accounts, we don’t have much to worry about right now and should be relaxed and just floating through life until our next chemo encounter.

But oddly my level of anxiety has actually risen instead of declined. I don’t have as much to be concerned about so therefore I worry about the lack of things to worry about. I add other non-Hazel related things to my list to make up for the amount of time I worried about Hazel. Then I feel bad because I am NOT as worried over Hazel and think I should probably worry about her more. This positive feedback loop of neurosis slowly loosens my once firm grip on reality and threatens to create chasms in my relationships with others, the least of which is my family.

Since Hazel’s diagnosis I have built my persona around managing information about her illness. I have created binders for her medical records; developed my own charts in Excel to monitor her blood counts; gathered an entire database of information on Leukemia; read books, medical journals, and nearly every resource I could get my hands on about her treatment. I have gotten to know her doctors extremely well, have the hospital hematology department on speed dial, and have a notebook that I keep a running list of questions on for clinic visits. I can recite her medications, their schedules and dosages by heart; always have a copy of her treatment roadmap on my person; and have a bag I keep packed for overnight visits at all times. That Boy Scout motto – Always be prepared – yeah, I take it to heart.

But for all of my preparation, my research, and my worry, have I really been able to change the outcome of her treatment at all? Have I truly been a benefit by serving as a walking Leukemia encyclopedia, spouting off percentages, study protocols, and side effect ratios? Nope. Probably not. Maybe. Who knows?

The cold, hard truth is that all of that preparation and learning and focus is not really for her, it’s for me. The results of all of my “work” over the past two months do not directly affect Hazel. Much of this journey is a waiting game; watching how her body responds to treatment, and then allowing our oncology team to make the best decision for her moving forward based on their experience and available research. In some respect though, none of us have any control over how Hazel will fight her cancer. At times this all seems like a big exercise in data collection and archiving, versus a hard-fought battle against an invisible foe.

For someone with a Type-A/organizer/fixer personality like myself, cancer is a tough disease to deal with. I can’t really DO anything that will make a long-lasting impact on Hazel’s prognosis. I control nothing and have no capability to offer assistance in any way. I don’t have a medical degree or ten years of focused research background in Leukemia. I have no pharmaceutical experience and I cannot prescribe chemotherapy based on Hazel’s height, weight, or diagnosis. But I can do one thing that will have an impact on her life: I can be a Dad.

I can hug her tight against my chest to show her I love her. I can sit in tiny chairs for tea parties, draw pictures with crayons in notebooks on the floor, and make one of the best playdough balls you will ever see. I can be the guy that builds tree houses, gives advice, tucks bedsheets, and kisses foreheads. The person she runs to with scraped knees, when her bike tire goes flat, or a clap of thunder scares her awake at night. The fixers of toys, the hot dog chef, the human jungle gym. I can be that guy, that job I can do and do well. Being a Dad is more than a hobby or a current fixation to me; it is a lifelong obsession, it is a calling, it defines me.

Each day brings new challenges, not just with Hazel’s cancer, but with all things that are brought to my feet as a father. I often struggle with these challenges silently, doing my best to hold the onslaught of troubles that sit on my family’s doorstep at bay. But in these times of anguish, as I grapple with my own reality and try to manage all of the emotions of childhood cancer, my character is forged. Like my father, and his father before him, I stand resolute; chin up, chest out, eyes focused far in the distance, to a better time for my family. A time free of sorrow, sadness, and pain.

Come what may, I can still be the protector, the comforter, the friend that Hazel needs; now and in the future. I can still be her Dad.

I feel a slight tug at my pant leg and look down into two piercing blue eyes, “Daddy, peez poooosh me.” Ok, baby. Let’s go.

“We love because he first loved us.” – 1 John 4:19

Unknown Strength

“You never know how strong you are until being strong is the only choice you have” – Cayla Mills

For all of the horror associated with its physical complexities, the emotional aspects of dealing with cancer are possibly the most difficult to bear. Cancer sufferers and their loved ones will tell you that experiencing cancer heightens how you feel and process emotions. Each experience becomes more poignant, more monumental than the one before. Your sorrow turns into a deep, gut-wrenching lament and your happiness is the most boisterous joy of your lifetime. Our lives swing back and forth between these two extremes on a never-ending pendulum of emotion, each swing bringing us increasingly closer to the tipping point that will bring our delicately balanced world crashing down in an unfixable heap.

This rollercoaster of emotion seems to make time speed up, leaving us motionless as the world continues on with a terrible ferocity that ages us by tenfold, minutes turning to days, days to months, and months to years. Other times, it seems that the entire world comes to a complete standstill and we are granted a single lucid, angelic moment of clarity, of peace, amidst the chaos that is everyday life. These moments are God-sent and allow us to put into perspective all that is happening in our lives, often refocusing our energy on things of actual importance, rather than all of the peripheral nonsense in which we can become entangled.

Cancer heightens our emotions because it brings us face to face with true mortality. It makes us realize that for all of our medical breakthroughs, scientific discoveries, and pharmacologic marvels, there is still a foe we cannot master. This insidious enemy uses our most valuable commodity – time – against us, turning our everyday life into a quintessential race that can never be won.

Cancer makes you think about life not as a constant, but instead as a shortening timeline, like grains of sand trickling through an hourglass slowly stealing your memories, your triumphs, your moments of joy. You begin to count your time not in minutes and hours, but instead by the second, because now more than ever, the next tick on your clock is not guaranteed. Cancer steals from you, it confuses you, it mystifies you in ways that are so infuriating that you are left feeling helpless and awash in your own sea of troubles.

And yet, not every day is a disaster, nor every week. Hazel has progressed wonderfully. She has regained so much strength and vitality that it is hard to believe that just over a month ago she was lying in a hospital bed, so weak that she couldn’t even walk around her room. She climbs the stairs to her room multiple times a day to retrieve a baby doll or to see what her sister is doing. She runs, jumps, laughs, giggles, and talks non-stop. Our week was filled with smiles and talk of other things beyond cancer; swimming, short family trips, sunshine, and bike rides. It truly was a glorious week in our cancer journey.

But just as suddenly as our life can improve, so too can we be reminded that Hazel continues to wage a war inside her body. With devastating cruelty our happiness came to an end on Saturday morning as we observed Hazel exhibiting telltale effects of the chemo drugs that pulse through her veins. Her legs are again beginning to weaken as are some of the tiny muscles in her left eye that help her focus and look straight ahead. As she plays throughout the day, her eye will turn in ever so slightly to the right, which affects her depth perception and long distance vision. These effects are likely temporary and given her age, there are lots of ways to correct the sight and musculature issues over time as she grows, but those facts do little to alleviate the pain we feel as she stares up at us with a quizzical grin on her face and we see her eye tracking over to the right.

Beyond her crossed eyes, most people wouldn’t even notice much is wrong with Hazel right now, and maybe we put more emphasis on this new side effect than we really should. For the most part, her eyes remain clear and focused, she still plays happily and her giggles throughout the house continue to bring us joy. But my heart drops when I see her reach for a small toy multiple times and miss because her depth perception has been altered, or when she rubs her eyes over and over again to try to clear her blurred vision.

It has been said that the eyes are windows to the soul, which is perhaps why this bothers me so much. Through our journey so far I have always managed to stay focused on our end goal because no matter how sick Hazel’s body became, I could always see “her” shine through in her personality, her actions, and by staring deep into her beautiful blue eyes. She is my daughter, our souls are connected, and we have always been able to communicate an entire conversation through a single look. In this newest side effect my greatest fear of all surfaces: losing that connection, that last known thread of communication with my tiny daughter. I worry that without that connection she will feel trapped inside of her body, unable to escape the monster that attacks her from the inside out and unable to find solace in me, her father.

Despite these fears, Hazel reassures me every day that our connection remains strong. She shows me that this disease may change her body, but it will not break her spirit. She laughs her deep, belly laugh when her favorite show is on, sings at the top of her lungs to Trolls and Moana songs, and taps her foot with hands on her hips as she impatiently waits for me to finish fixing scrambled eggs. She dances, she jumps, she says “I lub you” constantly. She may have to find ways around her side effects and her illness, but Hazel is still Hazel, and nothing that happens to her tiny body will ever change that.

Cancer comes as a thief in the night, attacking what you hold precious at times when you least expect it. Regardless of the level of fortification and vigilance in your life, cancer will find the chink in your armor. Our emotions remain heightened as we pour more and more layers of love, care, and attention on Hazel, building up as much protection as we can against the next attack, whenever it may come. This heightened awareness takes a heavy toll on our sanity and our energy, but it does have a positive effect as well. It makes us intentional. Intentional with our time, intentional with our actions, and intentional with our love. Our household does not just “go through the motions” anymore. Everything we do has a purpose, and that purpose is to remain strong.

My family of six is the strongest team I am ever to witness in my lifetime. Cancer is a disease that threatens to tear apart families, stripping away layers of comfort and happiness bit by bit until nothing is left. But not ours. Not now, not ever. Like a battle unit, we stand strong for Hazel, and as the lead warrior tires or is wounded, the next in line takes his place to weather the cavalcade of attacks. We each dutifully take our place at the front at different times, but can always return to the back for a period of respite when needed. We will not be beaten, we will not fall. For as my eldest son Paul – wise beyond his years and far too experienced for the age of 9 – said the day he learned of Hazel’s diagnosis, “We are in this together, as a family, as one.”

“Be strong and bold; have no fear or dread of them, because it is the Lord your God who goes before you. He will be with you; he will not fail you or forsake you. Do not fear or be dismayed.” - Deuteronomy 31:6-8

A Mother's Love

Sigmund Freud once said, “I cannot think of any need in childhood as strong as the need for a father’s protection.”

I can think of a need even stronger than a father’s protection – that of a mother’s love.

Mothers have to be strong, a rock for their children to stand on, a foundation of love from which they can launch into the tumultuous sea of the world. They are an island to which their children can always return if that sea proves too rough or unpredictable to safely swim. Fathers may be fixers, protectors, and tinkerers, but mothers are healers, lovers, and soul catchers. Mothers manage the different challenges of life with grace and poise, but are always ready to protect their young with staggering ferocity.   

Yesterday was my beautiful wife’s birthday. Elizabeth Ann (Chamberlain) Miller was born 35 years ago to a set of wonderful, loving, and attentive parents in Marietta, OH. Over the years Elizabeth’s dad has commented on how much Elizabeth reminds him of his own mother as she tends to our small brood, doles out discipline, or collects all of her “chicks” together for dinner. All I can say is what a wonderful woman Grandma Chamberlain must have been.

I have spent 16 years with Elizabeth, loving, laughing, and building a life. That time has been a whirlwind from the beginning. From college on to graduate school, then into the workforce, having kids intermittently, being downsized, finding new jobs, buying a house, moving, business ventures, having more kids, and finally to the present she has stuck by me, every step of the way. We have had a host of miniature disasters and victories throughout life, but she has always been my stronghold, the lighthouse among the rocks, a beacon on which I can base my course.

During our cancer journey Elizabeth has been the very definition of poise and grace. The love that she administers to each of our children has always been breathtaking, but in this time of crisis and upheaval in our normal, she remains a pillar of strength, a shoulder to cry on, a tender hand to hold as we walk down this path together as a family.

Hazel’s cancer is a challenge for which neither of us were prepared. It was something we never wanted to experience, a burden we didn’t believe we could bear. No job, house, or car has ever mattered as long as our children were happy, safe, and healthy. Unfortunately, it was not in our destiny to avoid this trial and we are firmly entrenched in its throes now. This is certainly the largest and toughest storm we have ever had to weather – I would say in our lifetime – but we will weather it nonetheless, together, as one.

We are often asked how we discovered Hazel’s leukemia, after all, the actual symptoms of the cancer can often be difficult to spot until the disease is much more advanced. The symptoms of leukemia are often subtle, presenting first as what looks like a common childhood cold or phantom aches that mimic growing pains. Paleness, sleeping longer and more often, low grade fevers that dissipate within 24 hours, generalized leg pain, and night sweats are all early warning signs for leukemia…but they can also be symptoms of the flu, a viral infection, or a common cold. This is why the early onset of a blood cancer is so often missed, especially in children that cannot coherently talk yet. It is difficult for them to describe what they are feeling and the most likely problem is more often than not the simplest.

Elizabeth still questions whether we could have caught Hazel’s symptoms sooner. At least once a week, I will find her looking through pictures on her phone, comparing Hazel’s skin tone from one to the next, looking at the dates, and then checking her calendar to see what was happening during that time in our life. She has asked our oncologists numerous times what caused Hazel’s condition, what could we have done differently to protect her or keep her from this experience. In some way, Elizabeth continues to look for the mistake, for the shortcoming in our parenting style that has led to one of our children having cancer. But the truth is, there is no mistake, there is no shortcoming. As parents, we did all that we knew how to do and to the best of our abilities, but our lives were still touched by cancer.

Leukemia is very well understood at this point, it’s very treatable and in many instances curable, particularly in the childhood form. But for all we know about leukemia, the cause of the cancer eludes even our most focused scientific researchers. There is evidence that now points to genetic conditions that may predispose certain patients to the disease, but there is not a definitive genetic pattern that indicates someone will develop leukemia at some point in their lifetime. There is also not a specific environmental condition or chemical that is known to cause leukemia. And that is what bothers Elizabeth the most. The not knowing, not having an answer as to “Why” or “How” her baby got sick. I can see that it plagues her, keeps her up at night, troubles her soul at times.

And while we may not have an answer as to why Hazel is sick, I know why Hazel is alive – her mother. Elizabeth has an amazing bond with our kids, the strength of which can be seen on a daily basis as she “reads” them. She is the most empathetic person that I know, she literally feels our children’s pain, knows what their hearts want, and lives her life looking through their eyes. I know my kids love me deeply, but the adoration and affection that they have for my wife is on another level. It’s a connection that can only be had from living inside of a person for 9 months, listening to their heartbeat, feeling what they feel, solely dependent on them for life. I am not jealous of this connection, but I am thankful.

Leading up to Hazel’s diagnosis, Elizabeth “felt” that something was wrong. She noticed over the course of a month that Hazel was sleeping a bit more than usual, taking longer and more frequent naps, and appeared pale. She also would have intermittent, low-grade fevers that would dissipate within 24 hours was sweating profusely at night as she slept. In hindsight these signs are easy to piece together, but I can’t stress enough how disconnected they all seemed at the time, while we were in the midst of living life and not thinking about cancer. But Elizabeth noticed. She noticed and she was not afraid to take action based on her own intuition.

I was away on a project for work, gone for 4 weeks and on my way home, when she took Hazel into our pediatrician and asked for blood tests. Hazel looked and acted, by all accounts, fairly normal for a kid her age. At least there were no large glaring warning signs at the time, only her mother’s deep-seated worry that something was horribly wrong in her baby’s body. I thank God every day that we have the pediatrician that we do. He listened to Elizabeth, and more importantly, her concern became his as well. Our pediatrician has always been a source of comfort and solace for Elizabeth if she felt something was amiss with our kids. He shares the same mindset that we do in that for most childhood ailments, medical needs are relatively minimal and not cause for concern. But when he performed a general physical exam of Hazel that day and listened to Elizabeth’s recounting of the previous couple weeks, he became worried.

Hazel’s bloodwork came back with slightly elevated white blood cell count, very low red blood cell count, and very low platelet count. We immediately headed for Nationwide Children’s in Columbus, where we then began our journey into the abyss that is cancer.

Nothing about this journey is pleasant and it is often difficult to see the good in what goes on during our day, but Elizabeth’s intuition as a mother is a true blessing. Hazel’s cancer was caught exceptionally early. Her white blood count was high, but only slightly, which in combination with a few other factors put her in a lower risk stratification for treatment. Elizabeth worries that she missed the early warning signs, but the truth is she picked up on them so early that had she taken Hazel in at any other point prior, there would have been a chance of misdiagnosis and precious time would have been wasted in her treatment cycle.

Some people are destined for greatness, born to make a difference, if only they have the courage to follow their heart. Elizabeth was born to be a mother. She has always been amazing at it, but never more so than now, during Hazel’s struggle. She displays strength, compassion, empathy, and humility on a daily basis, serving as the perfect example for our kids. Someday this will all be behind us; it will be a story told around late night dinner tables as our grandkids sleep soundly and safely in their beds upstairs. Our girls will ask Elizabeth for advice and will draw on her wealth of experience in the darkest of days to understand what it means to be a mother.

I love Elizabeth more and more with each passing day. I love her for who she is and who she has become: the mother of my children, the keeper of my heart, and as Hazel’s savior. Our future may be uncertain, but I know it is bright because she is by my side. Together we triumph.

“Her children arise and call her blessed; her husband also, and he praises her: Many women do noble things, but you surpass them all.” – Proverbs 31:28-29

Stealing Courage

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ― Lao Tzu”

I used to identify the word courage with images of soldiers charging onto the battlefield or astronauts launching into the deepest unknown of space. I romanticized the word to be an attribute of heroes; of explorers and pioneers that found new worlds. Courage was a word reserved for voyagers crossing the ocean or for airplane pilots testing the outer limits of their equipment’s capabilities. Courage was not something I needed for my every day, “normal” life. I certainly didn’t need to be courageous in the small town of Marietta, Ohio. Until now.

Hazel has had a great week. Her blood counts were up at our last visit and she has pretty much cleared all of the high power steroids from her system so that means fewer mood swings and back to normal eating habits. It also means that some of the strength she had originally lost in her leg muscles is returning, which allows her to walk freely around the house, playing with toys and interacting with her siblings. The general mood in my household has been one of happiness, contentment, and dare I say, joy. It almost seems normal.

And yet, there is always the unstated understanding that things aren’t normal. We still dose Hazel with up to six types of medicine 2-3 times per day, some of which we are not even allowed to touch without wearing gloves. The chemo drugs Hazel is currently on tighten her calf muscles and tendons, which makes it difficult for her to balance and near impossible for her to squat down. She has lost all but a tuft of her beautiful red hair and the doctors want us to be prepared for even that to fall out shortly. Things are anything but normal really, but we charge on, soaking up every giggle, every smile, every happy moment we can find.

Living with cancer can make you feel a range of emotions every single day and sometimes all within a single minute. As Hazel toddles around our living room, happily playing with dolls, coloring books, and playdough, it’s easy to allow myself to feel like nothing is wrong; like Hazel battled this disease and won and now it is smooth sailing. But deep in the recesses of my mind I know that we still have a long road ahead. I know that she still will be receiving several rounds of chemo over the next several months that will beat her immune system back down. I know her counts will drop, more side effects will come, and there will be days that are once again filled with sadness.

My heart aches thinking about those days; I yearn for an answer for my baby girl that does not include more pain, more surgical procedures, and more hospital visits. Logically, I can justify all that is happening right now because I know it is saving her life, but my heart breaks knowing that she is being robbed of precious moments of childhood that she will never get back; innocence that she will never recover.

Our future is an unknown. There is no telling how Hazel will continue to respond or what side effects she will experience. I cannot tell you with certainty what tomorrow looks like, let alone two, five, or ten years into the future. That crushes me. I am brought to my knees in anguish every day by new ways this disease has touched our life and my family. Cancer is sneaky. Insidious in ways you would never imagine.  It winds its way into every aspect of your life like a tree root looking for water, snaking through even the smallest crack in the foundation that you felt was so strong before.

And that’s how it breaks you. Slowly, over time, patiently tearing away at all you hold dear, all that is close to you. Every time you think that you have closed up a crack, a new one somewhere else in your life opens up. It feels like all you can do is try to keep your head above water some days. Other days you are happy, but then you wonder, should you REALLY be happy? What are you forgetting? What new crack has opened up?

Cancer is awful and I hate. I hate it so much for what it has done to my family. Cancer burdens my heart like nothing I have ever experienced. I lay awake at night wondering what life will look like after this. What will my children’s lives be like? How has this affected them mentally, emotionally? What about our own parents, our own siblings? What is our struggle doing to them? How many years has this pain taken off of my own life? Elizabeth’s life? And then I think of Hazel…oh, Hazel. I no longer cry over Hazel’s experience, I weep. To weep is a more powerful, deeper experience than to simply “cry”. To weep is to mourn, to feel every aspect of sorrow as the tears fall from your face. It is to sob, tremble, and exude the emotion that your mind is incapable of comprehending at the time.

Cancer has stolen many things from me, but I will fight back. I will take from cancer too. One thing I have taken from cancer is courage. I know now that I live with a band of heroes. We all suffer in our own ways, we all fear what is unknown, but we press on. That is courage. Courage is continuing to do what you must, even if the circumstances are horrible. Courage is not being terrified by the odds because they don’t matter anyway. What matters is what is right in front of you.

Courage is not only found on the battlefield or in deep space. Courage is everywhere that I am. It surrounds me. I see it every day. It is within the four walls of my home as we wake each morning, pack lunches, and head for the school drop off line. Courage is my children explaining to friends that they can’t have visitors because Hazel’s immune system can’t even fight off the common cold. Courage is my wife, lovingly holding my little redheaded daughter each time they access her port, each time they take blood, and each time she is put under anesthesia for yet another procedure. Courage is watching cousins playing together as if nothing is different. Courage is having grandparents that are there every step of this journey, comforting, loving, suffering alongside us.

I can’t tell you what is next for my family. I truly don’t know. There are problems every day that come up that we were not prepared for, but we manage. We manage and we thrive. With each positive report, each giggle, each smile, our courage grows. We stand together, shoulder to shoulder, as much holding one another up as forming a wall of protection around Hazel. Some day we may be able to let our guard down, but for now, we remain, Hazel’s courageous few.

“…Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.” – Joshua 1:9