Even When It Hurts

“You are my God; have mercy on me, Lord, for I call to you all day long. Bring joy to your servant, Lord, for I put my trust in you.” – Psalm 86:3-4

Some of the most powerful passages in the Bible, the ones that speak volumes in the fewest sentences, are the Psalms. Why? Because they are real stories about life. They are incredibly emotionally-charged, and they speak to our human nature. They are songs written as an outcry to God, asking for forgiveness, for salvation, and in a few instances, for a reprieve from the Psalmist’s anguish.

Anguish is a complicated emotion and one that until recently I had never experienced. Anguish is a deep-seated, humbling, devastating, overwhelming suffering. It’s an emotion that settles into your being, it engulfs you, angers you, crushes you, it injures your spirit. Anguish is so much more than sadness because it consumes you, it forever changes you and it can cripple you. To be in anguish means to be constantly tormented and tortured by the circumstances of your life.

I know anguish because I must sit and watch as Hazel marches forward in this horrific, painful journey toward healing. I suffer because Hazel suffers and I will forever be tormented by the images of what she has had to experience during her battle. But tonight, as most nights, I calm my heart and let the tears stream down my cheeks as I listen to a song that has become my anthem, my life ballad, my ψαλμοί psalmoi.

Even When It Hurts is a song written by Joel Houston and performed by Hillsong United. The words of the song are powerful, but the performance is what charges me. Taya Smith portrays through her voice and actions all the convoluted feelings that are conjured up by anguish. Sometimes you whisper because you are beaten, sometimes you scream in sheer frustration, and sometimes you barely breathe because you are in awe of the magnitude of our God and Creator.

Lord, I have lifted so many prayers. Prayers of grief, of sorrow, of anguish. I have begged and pleaded, imploring for you to take this burden from me, from us, from her. I have screamed in frustration, I have wept, I have fallen headlong at your feet. Through my prayers, your answer has been gentle, but strong. I hear it, I may not understand it, but I will honor it.

Lord I pray that today, tomorrow, and forever, even when it hurts, I will continue to praise You.

Below are the lyrics to the song and video is linked above.

Even When It Hurts

Take this fainted heart

Take these tainted hands

Wash me in your love

Come like grace again

Even when my strength is lost

I'll praise you

Even when I have no song

I'll praise you

Even when it's hard to find the words

Louder then I'll sing your praise

I will only sing your praise

Take this mountain weight

Take these ocean tears

Hold me through the trial

Come like hope again

Even when the fight seems lost

I'll praise you

Even when it hurts like hell

I'll praise you

Even when it makes no sense to sing

Louder then I'll sing your praise

I will only sing your praise

And my heart burns only for you

You are all you are all I want

And my soul waits only for you

And I will sing till the morning has come

Lord my heart burns only for you

You are all you are all I want

And my soul waits only for you

And I will sing till the miracle comes

I will only sing your praise

Even when the morning comes

I'll praise you

Even when the fight is won

I'll praise you

Even when my time on earth is done

Louder then I'll sing your praise

I will only sing your praise

Peaks and Valleys

"I think we all have empathy. We may not have enough courage to display it." – Maya Angelou

BEEEEEEP! BEEEEEEP! BEEEEEEP! BEEEEEEP!

The grating siren of my alarm pierces its way into my sleeping psyche and jolts me awake. I blindly search for the snooze button on the hotel clock before realizing that my phone is the perpetrator of the horrific sound. I turn the alarm off and stare blearily at the bright numbers on the screen, “5:30am”. One hour before we must check in at the outpatient procedure department at Nationwide Children’s Hospital. We went to bed a short four hours earlier following a late night snack session for Hazel Basil, who is still managing the effects of being on yet another round of steroids that started last week.

Hazel has an outpatient procedure today called a lumbar puncture. The doctors will use a long, thin needle inserted directly into her spine to release a measured amount of chemotherapy into her spinal fluid. Turns out, our bodies do such a good job of protecting our brain and spine from chemicals in our bloodstreams, that methotrexate has to be delivered directly to the spinal fluid be effective on any cancerous cells that may have made their way into the spinal column or brain.

As Elizabeth and I get ready to go, Hazel rests fitfully on the bed. The current chemo cocktail that she is on has produced numerous side effects. As her white blood counts plummet, she becomes weaker and more irritable. She doesn’t sleep more than a few hours at a time and often is tired mere minutes after she wakes up. She is always hungry – thanks to the steroids – but is typically so uncomfortable she can’t figure out what she wants to eat. When she does decide what she wants, it often takes just a few minutes too long to make the food and she gets frustrated, yelly, and is too mad to eat. The vincristine makes her skin pale and more transparent and what little wisps of hair she had left have long since fallen out. Most days she just looks wiped out, frail, and forlorn.

We arrive at the hospital at 6:30am and the halls are already bustling. Many of the faces that greet us, both employees and patients, are familiar, having passed by numerous times over the past six months on the way to surgeries, check-ups, and infusions. We check in and sit in the waiting room until the nurse comes to get us.

We follow the nurse back to an “Access Room” and Hazel begins to whimper quietly. She and we know what is coming next. After checking a few standard vital signs, the nurse gently pulls down Hazel’s shirt to reveal a small bump on her upper right chest. This is her power port, an implanted central line into the large veins leading to and from her heart. The port is the preferred gateway into and out of Hazel’s system. All medications and chemotherapy are delivered via this port and it shows the signs of use. Small bruises indicate past accesses and there is a perpetual line of skin irritation from the multiple bandages that are used to secure the needle once it is inserted.

Elizabeth sits on the bed and has Hazel lay back into her lap. The nurse begins cleaning the area around the port with an astringent, which causes Hazel to gag and cough from the fumes so near her face. As the skin dries, a nurse readies the specially designed needle which is ¾” long and has a small tube with a clamp attached. Elizabeth wraps her legs around Hazel’s torso and gently holds her hand, telling her to squeeze it when it hurts. I lean in close to her face and gently hold down her arms and kiss her forehead. The nurse deftly leans in and places the needle into the port, but no matter how swift or accurate the placement is, Hazel still cries, screams, and tries to wriggle free. With tears streaming down her face she looks into my eyes and says “Owwww, owwww, owwww. Daddy, all done?! Owww.” Almost baby. Almost all done.

Co-workers, family, and friends often ask us “How is Hazel doing?” or “How have you guys been?”. I understand the premise of the question, they want to know how Hazel is feeling and if her treatment is progressing the way that it should. They want to know that she is ok and that my family is emotionally and physically capable of handling the cross that we currently bear. My default answer is always and will always be the truth, “She is doing well. We are ok.”

Hazel’s chemo is working and she is progressing at the appropriate pace for her treatment schedule, but that doesn’t mean that everything is simple or picture-perfect. Our daily routine is filled with the constant struggle of managing side effects, ranging from relatively minor mood swings to more drastic physical effects on her vision and temperature regulation. We have recently begun an eye-patching program to deal with amblyopia, likely caused by a combination of vincristine and far-sightedness. Some of Hazel’s chemo has also caused nausea, vertigo, and made her hands shake constantly. We have added medications meant to combat these side effects, but these come wrought with their own new set of side effects yet to materialize.

Our family is ok, too. Not great, but ok. We would be doing better if we didn’t have to deal with cancer, but beyond that, the kids are doing well in school, my job is solid, and everyone seems to be adapting to our current normal. I even spent some time with each of our older kids in the woods last week, chasing the ever-elusive bushytail through the treetops.

All told, we don’t have much to complain about right now, but I still struggle with the sheer volume of all that is happening to such a tiny person. I worry what it is doing to my family; what it is doing to her emotionally. I am thankful for the fact that she is so young, in the hopes that someday she may not remember all that of the pain she has been through. But I will remember. I will remember every access, every surgery, and every infusion, each event forever etched into my memory like a past battle from a far-off war.

Like any journey, ours is fraught with its own share of peaks and valleys. On any given day, when asked “How are you doing?”, I am likely only on the slope that connects our last summit to an impending gorge. Most of our time is spent climbing or descending that slope, trudging our way to the next poignant moment of happiness or hurtling toward a basin of despair. The miles between those two extremes often get forgotten, overshadowed by the sheer intensity that comes from achieving a monstrous goal or being delivered a staggering blow of disappointment.

The journey on that slope is too quickly forgotten, the process too swiftly minimalized. The steps we take toward our next “destination” are important, they are sacred. Those steps create our character, build our emotional stamina, and teach us many things about the human spirit. There is no way to sugarcoat it: the trip we are currently taking is awful. It’s terrible for my kids, my wife, and myself, but even worse for Hazel. Most of what she deals with daily to “make her well” is appalling, and yet it is so much better than the alternative.

There is no way that I can accurately tell you how I/We are doing. Most of the time, I don’t even know. But I do know this: every day we move forward. We put one foot in front of the other and continue along our path. We don’t always know the destination, but we always know the direction and that gives us purpose; that gives us hope.

In the distance, I see our goal: a magnificent peak with lush, green foothills, that give way to warm, lazy alpine meadows. The trail that meanders up its slopes toward the heavens ends at a majestic summit so close to the sky that you can almost touch it. Someday we will stand on that summit with Hazel, our shoulders heaving in exhaustion, but our faces jubilant and pointed toward the sun. The journey to get there is long, with many twists and turns yet to come, but we have a guide and He has a map. Our fate was written long before we even existed and this is simply part of the journey that is our life. Today may be tough, but we are ready for tomorrow.

“For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

A Letter from Dad

To My Kids: 

Today is Hazel’s birthday, a celebration of her presence on this earth, an anniversary of the day that we met the little firecracker that would forever change our life, for the fourth time. Our culture celebrates birthdays for a number of reasons, the least of which is often the fact that we simply “survived another year”, however this year, in our family, that reason more than any other seems extremely poignant. On this day that is meant for celebration and happiness, presents, family, laughter, and love, I am compelled to address this letter to all of the special children in my life. May my words impart some sort of guidance, some level of wisdom as you grow into the leaders of our tomorrow.

I reflect on my 34 years and cannot remember all of the details, but major events – births, deaths, triumphs, successes, surprises, and devastation – create the story of my life. Certain years have been better than others, but they are all my years, my memories. Some memories are filled with pain and I will look back on 2017 with vibrant, mixed emotions. Our family has witnessed incredible heartache, agony, fear, and a roller coaster of successes and setbacks in 2017. The journey from April 17^th to today has seemed long and arduous, but has passed in mere seconds. In these six months I have aged easily two years, the burden of worry and sorrow weighing heavy on my brow as we have fought the diabolical foe of childhood cancer. I have often seemed distracted, irritated, tired, unhappy, or simply beaten, but please understand that has nothing to do with you and how proud I am of each of you.

My beloved little ones, you mean everything to me. You are my entire world, my breath, the beat of my heart, the joy in my soul. All that I do is for you: the late nights and long days, the trips to far-away places, the pain, the anxiety, and the sadness I bear only so that your lives may be made easier. Since the day I met each of you, I knew that I was in the presence of greatness. God has touched each of your lives in numerous ways and I hope you spend the rest of your days walking with Him.

This year has been tough. It may seem that since Hazel’s diagnosis all of my focus has been on her, but please know I would do the same for any of you. I would at any second trade my life for each one of yours, without hesitation, without thought. I have often prayed those very words as I sat through every surgery, every infusion, and every doctor visit with Hazel. I prayed it as I sat in the room next to Gideon writhing in pain from appendicitis, and I would again pray it for each of any of you in pain. Being so young, you cannot understand the connection that I have with you, but I know you are aware of it. I see it in your eyes, feel it in your touch, hear it in your voice. You are more than part of me, you are all of me, everything good about me. You are the greatest thing I have ever done, you are my life’s work, and I marvel everyday because I know you are each so much better than I. I can’t wait to see what you do in this world and I feel privileged to be part of your lives.

I want you to know that I see you. You are all special to me and it is important that you understand some of the reasons why:

Paul, you were my first glorious glimpse into fatherhood. I was beyond excited, but scared, unsure, perhaps intimidated, but you calmed me. You showed me I had a greater purpose and I immediately fell in love with you. You are the most compassionate person I know. Your heart is so much bigger than mine and you have such empathy for those around you. People are drawn to you and will follow you because they trust you and know you are a man of character. Your grin is infectious and can turn the toughest situation into a bearable one. You are always concerned about Hazel and you two have such an incredible connection. She comes to you for protection, love, and guidance. You comfort her always and I have no fear that some day when I am gone, you will live on as her champion.

Gideon, you are strong and rational. You are confident in your decisions and are not afraid to stand up for your opinion. You buck the norm and unabashedly present facts to support your point of view. You are also loyal and love fiercely. Your friends hold you in confidence as someone they can trust and who will be there for them no matter what. You are intuitive and constantly think of practical things to help Hazel stay safe and healthy. The week after Hazel was diagnosed with cancer you presented to your class so that they would understand what your little sister was going through and how you were going to keep her safe. Hazel looks to you for help in many ways and you are so  tender and gentle with her. You have shown her what it means to be brave and I am assured that your relationship will only grow stronger as time passes.

Aurora, you are Hazel’s best friend, now and always. You are bubbly, fun, vibrant, and gorgeous. You stole my heart from the first time our eyes connected. Even today I fear if I stare into your deep brown eyes for too long I will be swallowed up by their grandeur. You are confident and have an amazing wonder for life that constantly brings joy to others. You explore and experience our world in new, exciting ways that makes the mundane seem spectacular. Hazel looks up to you and mimics all you do. You have taught her that all situations can have a silver lining. You will forever be Hazel’s teacher and a close confidant that shrouds her in love.

No one could have prepared your mom and I for dealing with cancer, nor could we have imagined that some of the most difficult situations aren’t even in a hospital. They are the intangibles, the collateral damage of dealing with a life-threatening disease that is all consuming, touching every aspect of life. Your lives have been touched by so many, but none so much as your cousins. We have spent much of this year “quarantined” from the cousins for one reason or another, all cancer-related. We have shed many tears over decisions that we have had to make this year, including missing birthdays, family events, and experiences with the ones that have always been so close to us. I have a few words for your cousins during this time of reflection as well.

Kip, you were my kids’ first friend. You are so smart and loving and kind. You yearn to be with my children and some of their fondest memories have been spent running around the Big House escaping “The Monster” with you. You all have grown up together, experienced life together, and continue to learn from one another. You taught all of my kids a sense of community, and I will never forget that. Upon Hazel’s diagnosis you were worried, concerned for her and for your other cousins. The first time you saw Hazel after she got sick was hard, but it had no bearing on your love for her. You have remained an important part of her life and have helped instill some normalcy to an otherwise abnormal time.

Grace, I worry as much about you as I do my own children. You are curious and stubborn, but love to have fun. Your nose crinkles when you smile and your eyes tell of a far greater intelligence than any of us can possibly know. You love my kids, ache to be with them, if only in proximity because you share a common bond. You and Hazel are closest in age and she could not wait until you could walk so that you could explore the world together. When you two visit, the air is filled with eruptions of giggles and squeals, laughter and the pitter-patter of adorable little feet. I know you don’t understand what Hazel is going through right now and that is for the best. You take Hazel’s mind off of the struggles of her everyday life and allow her to be a kid again. She loves you and always will.

Sam, you are boisterous, infectiously happy, and fearless. You are the luckiest of us all. You will grow up not even remembering that Hazel experienced cancer, save for some photos, my writings, and stories that your family tells you over the years. Hazel loves you and has always called you Baby Samuel. She has gotten to be your protector, caring for you as her own precious package of excitement. Your eyes light up when you play with Hazel. You were a gift to her, the opportunity to be older and to teach someone things that SHE has learned about this world. She is your mother hen. I pray that all of your memories with Hazel will be happy ones and that someday, your kids and hers will play together as you two do now.

Hazel, finally my dearest I am to you. Someday all that will be left of your cancer will be scars. Scars can be ugly and they can be painful, but they tell a story. Your scars will be a tapestry of triumph, a tale of love that is woven throughout generations. Your scars will be nothing but shadows of the healing grace of God and the strength of human nature. You are now and have always been beautiful. You are focused and unwavering in the face of adversity. You are strong…so much stronger than I. I admire you and you lead me in reverence during every day of this journey. I am so unbelievably sorry that I cannot protect you from this, but I am doing my best to get you through it. I would do absolutely anything to take your place. I am sorry that you hurt, I am sorry you miss out on life right now, and I am sorry you have cancer. I love you and I promise to never leave your side.

The reach of cancer is inescapable, it is perpetual, it is everywhere. Just within our family, Hazel’s cancer will have a presence in nearly a dozen children’s lives before the age of 10. Some of you will see it first hand, others will hear stories and see pictures, but you will all have more experience with cancer than I did as a kid. That seems sad and unfair, but perhaps some good can come from it. I hope Hazel’s story will give you strength. Maybe her scars will teach you how to heal and maybe her struggle will teach you to be strong. I do not know what the future holds, but I believe in you, my kids.

I still hate cancer, but I love you all deeply and love will overcome.

Happy Birthday Hazel, just one of many.

All My Love,

Dad

“Love…always protects, always trusts, always hopes, always perseveres. Love never fails. And now these three remain: faith, hope and love. But the greatest of these is love.” – 1 Cor. 13:6-7, 13

True Power

I am not afraid of tomorrow, for I have seen yesterday and I love today. - William Allen White

I am not overly philosophical, but watching my angelic child suffer from blood cancer has provided many opportunities for me to explore my inner demons. I have learned many things about myself and about human nature in the past five months, the least of which is not the strength we can draw from one another. Dealing with a life threatening disease in any capacity causes one to pause in deep contemplation, if for no other reason than to attempt to make sense of your current situation. I have struggled with many internal battles, none the likes of what Hazel is dealing with, but emotionally I have been torn down. I have had my morals rocked, felt my inner strength tested, and dealt with the nagging enemy of depression that is always just a few steps behind me, nipping at my heels.

My contemplation began in the early days of Hazel’s diagnosis, touching on the realities of life and death. How would I deal with outliving one of my children? What would it do to my faith? Would I ever recover from such a horrible, unimaginable tragedy? I never found the answers to those questions. I suppose I could say that I forgot about them as Hazel’s condition improved and we moved further away from the remote possibility of losing her. But that isn’t entirely true. The truth is that I never fully answered those questions because I am much too afraid of exploring those dark depths of my heart. Selfishly I never want to experience that feeling of loss; attempt to heal the gaping hole that not having Hazel would leave in my life. It’s as if by exploring those thoughts I somehow give power to the cancer that could rip her from my grasp; that by acknowledging her plight it becomes more “real.”

I have often waxed nostalgic in this space about what cancer “does” or what it “takes” from us. There is no doubt that cancer has changed my life, but it is only recently that I have truly begun to understand on a highly conceptual level what a disservice that type of thinking has done for me, and for us all really. Like many of you today, I was afraid of cancer. It was the only thing that I prayed my daughter did not have as I entered the hospital and began the process that would eventually lead to her diagnosis. When the news was delivered I thought nothing could be worse, there could be nothing more terrible than being told Hazel had cancer. My fear stemmed from my limited understanding of cancer and how it is treated. It was tied to what I had experienced in the past with my grandmother, a heart-wrenching, physically-painful fight that ended in loss. In short, my fear was based on the unknown, not the known.

My fears are not unfounded as we know that for as many lives that have been saved within the walls of Nationwide Children’s Hospital, just as many have been lost. Every time we visit the hospital, we walk the same hallowed halls that hundreds of other parents have walked, many of which were experiencing the worst days of their lives. Death is a difficult concept to bear, but when it is associated with children it becomes the purest evil that I believe our world can see. To watch someone lose a child is to see them be destroyed from the inside out; to literally lose the will to live their own life. Suddenly nothing matters anymore. They have no goals, no concern for what is going on around them. They become a shell, a ghost of their former selves with a far off stare of hopelessness.

A lot has happened in our cancer journey. We have finished a treatment phase, went through a long purgatory waiting for blood counts to rise, successfully started another phase, finished that phase, and are now in the middle of a more intense treatment regimen. We have seen additional side effects come and go, dealt with common bumps, bruises, and fevers; visited the hospital more than seems possible in such a short time.

We are adjusting to this life and learning what it means to live with cancer. I hate to say it, but at times this life feels almost routine. We have never been where we are now. We feel suspended emotionally. Not sad, not happy, but just here. For the most part, our life now only includes cancer and doesn’t totally revolve around it. But there are still days that we live with fear.

Our fear is what gives cancer its power. By fearing cancer and what it brings, we give it authority over us and over our lives. The reality is cancer is nothing more than a genetic mutation. It doesn’t choose its victims, it doesn’t fight with any type of focus, it is not malicious. Cancer simply is. We attach power to the word with our own emotions, but we can choose to take that power back. We can choose to manage our fear, control our emotions, and understand that cancer is a malady of this earth, and this earth alone.

I have for too long made cancer the main antagonist of this struggle. I have focused my story on the villain, and not the heroine. The reality is that 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 what it means to be strong; she has shown me what God can do with a little faith and a lot of love.

Inside of Hazel’s tiny, frail frame, God has housed a spiritual powerhouse. In her birth, she served as the anchor for our family, the final stone to complete our small family arch. If her mother and I are the foundation stones, Hazel most certainly serves as the keystone. She locks us all in place and allows our family to bear the weight of the world as it rains down upon us. With her here, we shall never fall.

Even in her sickness, Hazel has united a diverse community, a family of believers and non-believers, strangers, friends, and advisors all connected through their love and care for her well-being. Hazel has taught us to be strong, to stand up for what we believe in, and to use love to combat the forces of evil.

Since her diagnosis, my perspective of Hazel has changed. I first thought of her as a cancer-stricken victim, fighting for her life against an unfathomable foe. She was so weak, so fragile, as she lay alone in her hospital bed. I wondered, “How could someone so small battle something so big?”

As her treatment progresses, I have begun to see Hazel for what she truly is: an inspiration, a fighter, a warrior impervious to the struggles that she faces every day. She has shown me what it means to be created in God’s image. She feels everything, sees everything, and experiences everything in life with incredible gusto. Hazel has not conquered her fear of cancer, she just never had any in the first place, and that is true power.

“…but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.” – Isaiah 40:31

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.