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

Breathing It All In

I close my eyes and feel the cool, wet kiss of the tears as they stream down the sides of my cheeks and run into my beard. For the first time in what seems like forever, I breathe in deep and long and can smell…soap…and water…a hint of lavender. The smell of clean. The smell of fresh. The smell of happiness. My nose is tickled by the light touch of airy wisps of red hair as they brush against my lower lip and Hazel’s warm body rhythmically sinks into mine as her deep breathing aligns with my own. She lay sleeping soundly on my chest, comfortable, at peace. In my world, in my new normal, this, this one snapshot of time, is perfection.

Today was my birthday, May 19^th, 2017, just over a month from the day that my world was completely turned upside down. A lot has changed in 33 days, so much in fact that I had basically forgotten that I even had a birthday coming up. It didn’t seem to matter that much anyway. Celebrating my turning 34 seemed pretty stupid to me when my baby girl was fighting just to be able to see her 3^rd birthday. But there was significance to this day that will forever be etched in my memory, and it has nothing to do with candles on a cake or wrapping paper. In the afternoon of May 19, 2017, I received the news that Hazel’s blood, spinal fluid, and bone marrow aspiration had come back negative for overt signs of Leukemia. She is on the road to remission.

Earlier this week Hazel had undergone a very specific test called MRD evaluation, the results of which were supposed to be available by Friday. These results would determine Hazel’s treatment path moving forward and would also tell us how her body had responded to the chemo treatments thus far.

Sidebar:   I have thus far stayed pretty far away from numbers and medical facts in my blog posts for a couple different reasons.

Number one, Leukemia is a complicated disease and there is a ton of information already available that I would add nothing to by writing about it. Sometime when you have an extra hour or eight, ask me about it and I would be happy to share. Otherwise, if you are interested in reading about Leukemia, a good place to start is here: http://www.nationwidechildrens.org/leukemia and the rabbit hole only gets deeper from there.

Number two, I have spent most of my time in the past month simply trying to process the emotions and changes that myself and my family are going through. Every single day, I kid you not, every one, is a mess. Our life right now is a surprising casserole of normal, everyday activities, with short bursts of happiness and joy that always seem to be skirting the brink of total disaster and dismay. Trying to manage the chaos of a family of six is challenging enough, but it becomes a special type of miracle when one of your littles is dealing with a blood cancer. My writings thus far have really been an escape more than an informative venture.

With all that being said, I feel that this post deserves some actual scientific backing to accentuate the importance of recent happenings for our little Hazel. I have spent considerable time reading the research that Hazel’s treatment is based on. I go to bed reading riveting copies of Nature, Blood Journal, Leukemia Journal, and the annals of Children’s Oncology Group.  Yes, I know I am neurotic, but buckle up and prepare to get nerdy; it’s time for some numbers.

MRD stands for minimal residual disease and is a term used to describe the minute amount of Leukemia cells that are still present in a patient’s body after receiving the initial courses of chemo that clear the blood and spinal fluid of diseased cells. Basically, MRD is a measure of the last of the last Leukemia cells left standing. Obviously, you want MRD test results to come back negative because it is indicative of being completely disease-free, right? Sort of, but not exactly. Let’s back up a bit.

As early as 15 years ago, Leukemia was considered by many to be a 100% fatal cancer, not immediately, but eventually. Many patients would undergo rounds of chemo treatments, achieve remission, then relapse numerous times and eventually succumb to the disease. The cause of the relapses was unknown until a new test, MRD, was developed to show that even though a patient could achieve remission of Leukemia in blood and spinal fluid, a very small number of diseased cells could still exist in the bone marrow. If chemo treatments stopped as soon as the blood and spinal fluid were clear, the small number of cells left in the bone marrow could recover and grow stronger, chemo-resistant Leukemia cells that made further treatments after relapse increasingly less successful.

MRD testing revolutionized the way certain types of cancers, and in particular Leukemia, were treated. MRD results now allow doctors to gauge how well a patient responded to initial chemo treatments by comparing the percentage of cancerous cells in a 10,000 to 100,000 cell sample. The lower the ratio of cancerous cells to healthy cells, the better response to the treatment regime. Doctors now know by looking at MRD results how much MORE chemo is required to completely eradicate all cancerous cells from a patient’s body. In other words, a lower MRD requires less intense treatment than a higher MRD to achieve “cured” status.

That explanation is the simple version. The complicated version involves understanding that MRD can be measured by a variety of test types such as flow cytometry, PCR based RNA and DNA sequence identification, and patient specific immunophenotyping. Each type of test provides a different level of accuracy and they do not all correspond with one another. Furthermore, different research groups use different thresholds and timelines to assign treatment and thereby an MRD negative result for St. Jude’s treatment protocols does not directly correlate to MRD negative results in Children’s Oncology Group protocols.

That may all seem confusing at first glance, but believe me I have spent some time perusing the details. I know the numbers. I know the percentages. I know the chances. Why? Because I needed to know what to root for. I needed to know on a scale of 1 to Holy Crap, how worried I needed to be when I heard test results come in. In a time of our life when I have zero control over any aspect of the outcome and we are awash in an undulating sea of emotion, I at least needed a map to find my way around the facts.

For example, I know that Hazel’s treatment is based on the Children’s Oncology Induction protocol that calls for less than 0.01% MRD status in bone marrow aspirate taken on Day 29 of treatment to be considered “Standard Risk”. What does that mean? It means that she is now in the group that in prior 5-year studies have shown a 93% chance of having a 0% recurrence value over the study period. It means that right now, her bone marrow only has 0.008% cancerous cells or 8 Leukemia cells out of 100,000 healthy cells. It means she is winning. It means she has a very good chance at leaving this all behind her.

It also means I get more chances to see her grow up, my family has more chances to breathe sighs of relief, and the world has more chances to experience Hazel’s impact as she grows into the strong, passionate woman I know she will be.

Childhood cancer has taught me many things over this past month, many of which I never wanted to know. However, good things have come of my experience too. I have learned our emotions can be so much deeper and richer than I ever imagined. In my first post I wrote of the spirit-crushing pain I experienced at Hazel’s diagnosis. That pain has never left completely. It’s lessened at times, but it is not gone and maybe it never will be, but also, maybe it never should be either. The pain reminds us of where we have come from, what we have gone through. It allows the moments of joy, the glimpses of happiness to permeate our being, to tap directly into our soul. It reignites an appetite for empathy, compassion, and an unwavering search for the truth.

The pain I feel for my daughter during this time of trial in our life can only approximate what God must have felt for Jesus as he was led to the cross to die. That was his son, his child he had watched grow from a tiny babe into a powerful man that was to lead a revolution and save the world from sin. Yet he was forced to watch him suffer immeasurable pain and be killed in one of the most barbaric ways known to man. God knew the outcome of that suffering was to be for a far greater purpose than any mortal could ever imagine.

I know that Hazel’s fight is serving a greater purpose. I know that her outcome will far outweigh the pain she has to endure on the way to that outcome. I may not know what all of this means right now or why we are experiencing it, but I do know that whatever the road ahead may look like, that God has Hazel in his hands.

For now, that’s good enough for me, as I choose to lie back, close my eyes, and breathe it all in.

“Do not fear, for I am with you; do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with my righteous right hand.” – Isaiah 41:10

Why and How (aka Cancer Sucks)

“He who has a why to live can bear almost any how.” – Fredrick Nietzsche

It has been a while since I posted my last blog. I attribute this lapse mainly to our return home and to a quasi-normal state with our kids, the house, my job, life in general. I also usually wait to write until I “need” to, until I feel a topic has been laid on my heart and the words seem to basically write themselves for me, essentially pouring out in a flow that if, left bottled up, would surely explode in some other less healthy and less therapeutic way than writing.

During our latest clinic visit, we had a conversation with the psychologist assigned to our family (On a side note: I hope some day to be able to write about the amazing team that Children’s has put together for Hazel. The breadth of the experience and resources offered to each family that visits this facility is truly monumental and we have developed relationships that will last over the course of our lives.). In that conversation, she made a statement that immediately struck me and has stuck in my mind ever since. We were discussing daily life and how we all were adjusting to being back home, having our family together, and getting into the swing of activities outside of the hospital when she said “Well this experience will forever change you, your kids, and Hazel. Not necessarily in a bad way, but you can’t go through this without being changed. It’s inevitable.”

It may not seem so, but that is a truly profound statement. Relatively few people that walk the face of this earth have a “before” and “after” experience. An experience outside of their control that, in no uncertain terms, changes the course of their lives forever. An experience that doesn’t just affect one area of everyday life, but shapes every aspect of a person’s very existence, even if in just minor ways. Cancer is that experience for my family.

Cancer sucks. If cancer were a person, I would find him/her and fight them to the death in the street. I would fight dirty too. Morals wouldn’t be an issue at that point. Cancer came after my baby girl, a precious innocent soul that has not even had a chance to experience some of the best parts of life yet. It changed her, robbed her of time spent with me, her mother, her siblings, and her extended family. Cancer made her feel pain she should never have to experience. It made her feel isolated and different at a time in her life that should be nothing but happiness, love and freedom.

Yet somehow, all of that isn’t even the worst part about it. The worst part is, cancer makes me watch. I have to watch as my vibrant young child becomes frail, loses her hair, and becomes so weak that she cannot walk upstairs. I have to watch as she has painful medical procedures, gets blood taken, and receives medicines so powerful that under any other circumstances they would be considered poison. I have to watch as she stares sadly after her brothers and sister as they attend birthday parties, ride bicycles, and play in the dirt while she is quarantined to our home. I have to watch as she cries, not because of anything in particular, but just because she knows this isn’t her normal life.

I know that all of this is necessary, that she will get better, become strong again and will be able to do the things that she loves. That doesn’t make me hate cancer any less. I hate cancer for her, I hate it for us, I hate it for the kids that we see each week we attend clinic. I hate cancer because cancer isn’t fair. It fights dirty. It attacks the ones we don’t expect. It attacks the ones that don’t deserve it. I hate cancer because I have no control over it and it takes good people away from those they love.

Our life has returned to a somewhat normal state. We are home, going to dance practice, birthday parties, skating parties, and school. We have family meals again, we sleep under the same roof. We enjoy movies all piled on the couch, our kids play with one another and our house is filled with giggles, and laughter and the pitter patter of little feet. But despite all of that normalcy, I cannot help but realize that some of it is simply a façade. My family now lives with an unwelcome house guest that at any point could create terrible upheaval in our lives again. We are reminded of this guest as we find small tufts of red hair on the couch or as we gingerly tiptoe around Hazel as she is walking to avoid throwing her delicate balance off and hurting her. Cancer entered our lives by force and we don’t like it.

This process does change you. It has changed us. This isn’t a cold or the flu, this is cancer. My life is happy, my little girl is regaining strength and each day we see more and more of the old Hazel return. My family is together, our friends have surrounded us in prayer and love, and we have begun rebuilding our life. Life truly is good.

But that life, our life, will never be the same again. Hazel may forget this experience as she ages and I pray to God that she does, but I will not. Never again will I wake up in the morning and NOT have a lump in my throat at the possibility that her cancer has returned. That fear will never, ever go away. It may fade and ongoing medical tests may prove that she is cancer-free, but for the remainder of my days I will remember that at one point there was cancer in my life. Cancer tried to take my little girl.

Each day is precious, but each day can be a struggle. Before Elizabeth and I go to sleep each night, as we are laying in our bed, listening to the soft night sounds of our little ones as they dance through dreamland, we always say “Today was a good day.” We are always totally exhausted and emotionally spent – a tiredness like none I have ever known before, but we never forget to say that phrase. Right now in this time of total dissention in our normal, it is vitally important to us that we remember each day is still a good day, a lovely day with our girl. Hazel is our why, and the how right now doesn’t matter.

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

Our Circle Grows

Merriam-Webster defines the word “tribe” as a social division in a traditional society consisting of families or communities linked by social, economic, religious, or blood ties, with a common culture and dialect, typically having a recognized leader. While I may not be a well-recognized literary powerhouse, I would like to tweak that definition just a bit based on my experience over the past several weeks. I believe the original definition focuses too much on creating divisions and not enough on the unity of the whole.

Originally when I wrote about our “Miller tribe” I was operating under the guise that my little family lived and functioned as an autonomous force. Like early tribal groups that lived in hostile, unforgiving environments, when faced with danger or a challenge the Millers would draw in close to one another huddled in a circle of solidarity, ready to take on the enemy as one. Over the past weeks the Miller tribe has met a foe that we cannot beat alone; one that has attacked our youngest, most vulnerable, and most innocent member. But also during that time, we have seen our circle expand by multitudes.

Many people lovingly refer to my kids as “stair steps”, with Hazel being the shortest stair on our tiny set of steps. With her shock of red hair, deep blue eyes, and fair complexion, she portrays a stark contrast to my other three blonde, dark complected offspring. I think every parent would say their kids are the best mix of their and their spouse’s personality traits, but I have yet to see a more spirited combination than what is found in the tiny package of dynamite that is Hazel Elizabeth Miller. Headstrong, decisive, yet compassionate, Hazel has always been unafraid and ready for any new adventure. I have yet to see her back down from a challenge, no matter great or small.

Ever since she was born, Hazel has been the glue that pulls our little family together. Her siblings may tease her now and then, but heaven help the poor soul that may say a cross word to Hazel on the playground. I have watched from afar as my three eldest descended like a pack of hungry wolves on anyone they believe had wronged their Hazel Basil.

That isn’t to say that Hazel can’t take care of herself too. Being the youngest of four (and a girl to boot) warrants a certain brand of toughness that can’t be taught, it’s just inherent. Her siblings (and a few nurses) can attest to the power and accuracy with which her adorable little legs can deliver a swift kick if the situation warrants, yet oddly enough in nearly all instances the person on the receiving end of her wrath would rather hug her than retaliate.

Hazel seems to have that effect on people. She loves so innocently that it is almost as if it is contagious, bringing out the best in nearly every person that she meets. Over the past two weeks I have witnessed the “Hazel Effect” on a grand scale. Within 24 hours of Hazel’s diagnosis my family witnessed a tremendous outpouring of love on every front imaginable. We had friends and family sitting with us in the hospital, calling us, setting up financial support, prayer chains, Amazon lists, non-profits, the list goes on and on. The response was so overwhelming and so immediate, we almost couldn’t process what was happening. In addition to our friends and family, we had complete strangers contacting us from local and national organizations offering to help, the hospital put us in touch with financial counselors, psychologists, and social workers. Churches sent cards, set up meals, offered to mow our yard while we were gone.

Watching this unfold is a humbling experience; to know that so many people on this earth care what happens to my daughter rocks me to my soul. Years ago while I was a freelance writer I had written a short piece on the concept of relationship webs. Essentially, the relationships we develop during this lifetime do not exist in straight lines, but instead exist as web that is weaved throughout time, the strength of which varies depending on a variety of factors including the experiences shared, time spent together, and spatial proximity to one another. In my writing I had argued that the strength of a relationship did not have to necessarily be built over time, but instead could be gauged on the impact that each participant had on the other.

Hazel puts that theory to the test as she has literally thousands of people across the country praying for her and providing support. Many of these people have likely not even met Hazel face to face, but they know someone who has. The impact that Hazel has had on the people she has met is what connects us all as a whole. It is what drives us, gives us hope, and allows us to face each day.

Over the course of the last two weeks, my perspective has changed a great deal. My point of view used to be, “If any of my kids had a life threatening disease, it would crush me. I don’t know how I would go on.” My experience with childhood cancer is minimal thus far but has taught me many things already, the least of which is not the indomitable will of the human spirit to charge forward even in the toughest of times.

As we charge forward, we are so thankful to have you all with us along the way. This journey will not be easy; we know it will be wrought with heartache, uncertainty, and fear. But we also know we are not alone, in faith nor in number. Our tribe has grown and our circle is fortified with warriors of all types. We are ready for the fight. The #MillerTribe thrives.

“But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.” – 2 Corinthians 12:9-10

The Tribe

Eight months ago I started a new job. During the onboarding process with our HR Administrator I was given a questionnaire of some basic information about me and my background that could then be circulated to the other employees in the company to get to know me a bit better. One of the questions was “What is your greatest accomplishment to date?”

I know that for the most part this was a career-based question designed to help others understand my personality and work demeanor, however when I thought for a moment about the true mechanics of the question, I realized my greatest accomplishment was not work related at all. I define accomplishment as a success that changes your life and the life of others in some meaningful, positive way. I have never measured my success by my bank account, the size of my home, or what car I drive because I know that these things are material and often in our society do not define the true measures of a man’s integrity and character.

I am reminded of my greatest accomplishment every day because it still surrounds and consumes me. I answered the questionnaire with two simple words, “My family.” Later on when I saw my HR Administrator she told me that was the best answer to that question she had ever seen. My reply was simple, a shrug of the shoulders and a simple “They are why I do what I do, every day.”

I have a loving wife and four wonderful kids that drive my actions every single second of every day. Everything I do is to make life a little better for the tight little family unit that my wife and I have created.

People that know us call us a tribe and I would like to think that this is not solely related to our somewhat astounding numbers. Rather I hope it is based on our attitude toward one another. We live and breathe one another. My house might as well be a single room, because we rarely are ever apart while we are there. We eat together, sleep together, and live life…together. My kids share a connection with my wife and I and one another that is so deep, so spiritual in nature that the word “love” does not describe it sufficiently. Our souls are connected as one, a conglomerate of caring, compassion, and unyielding faith in the whole.

It is love at its most powerful and it is the truest expression of agape that I am sure to ever witness on this earth. Paolo Coelho said, “Agape is total love, the love that devours those that experience it. Whoever knows and experiences Agape sees that nothing else in this world is of any importance, only loving.” I believe that God gave me the family I have so that I could learn to understand his love, agape love, a little better. One time when I was younger I remember my dad telling me that he would do anything for me, give up life and limb so that I could live a better life, no matter what it meant for him. Until I was a husband and a father, I never truly understood what he meant.

My family is in the struggle of its life right now. One of ours is hurting and we can’t make it stop on our own. Elizabeth and I have cried until we can’t cry anymore for Hazel, but the pain starts anew when we see our other children grapple with the realities of Hazel’s illness. Each of our three eldest deal with it in their own way, but there is no doubt that their hearts hurt for her. After four days of successful chemo treatments, we brought the other three kids to Columbus to be with us as a way to help our family begin the healing process together. Much of our time has been spent roaming the halls as a gaggle of six, following around this tiny red headed person wearing a mask and pulling along an IV pump. We visit the toy room and play for hours, watch movies, and simply just “be” together. Our oldest says it’s not the same and he is right, it’s not, but it’s what we’ve got right now. We all know Hazel is the same fireball we had before, but she seems so much more fragile as she toddles around in her miniature hospital gown. Thankfully, her personality remains intact as she says please and thank you to the nurses when we get the play room key, sings along to her favorite movies, and sticks her tongue out at me just to get a reaction.

My wife and I used to tease with friends, saying “Lifing is hard today,” but we had no clue how truly tough life can be at times. Struggles prior to Hazel’s diagnosis seem pretty insignificant now and each day brings a new set of difficulties that we did not anticipate the day before. But we are figuring it out. Our family is slowly putting the pieces together and creating our new normal. We are strongest when we are together, living and loving as one. The Miller Tribe moves on and remains strong.

“Love bears all things, believes all things, hopes all things, endures all things. Love never ends. - 1 Corinthians 13:7-8

Introduction

I have had a difficult time deciding what to write here. I am familiar with writers’ block, but this is something different. It is not a problem of not having anything to write, but instead a struggle to sift through all of the things that I want to write. Instead of informational, I am choosing to use this avenue therapeutically. As a writer I use prose to express the emotions and thoughts that on a typical basis cannot be loosed in everyday life. The written word allows me to reflect with 20/20 vision on the events I have witnessed and portray in relative clarity how I have chosen to process those events on a physical, emotional, and spiritual level.

The best writing I have ever read has always been charged with emotion, filled with passion, and driven by life challenges. The ramblings on the following pages are raw and unedited; not meant to be pretty, grammatically correct, or literary works of art. But they are my life, our life, and our journey with Hazel.

Easter Weekend, 2017 - Diagnosis

I have always seen life as a journey; an adventure if you will. The paths we take during our time on this earth are fluid and we often go through “seasons” of life that vary in difficulty on a variety of levels. The complexity of the interaction of those levels is often what leads to stress and how we manage that stress is manifested in a number of different ways.

The seasons of life are definitely not the same for each person, couple or family and often the season will be characterized not only by time, but also by the type of difficulty or triumph that the person or person(s) were going through at the time. Some seasons are long and some short, some are defined by spiritual troubles, relationships issues, financial struggles, or emotional achievements. The transition from one season to the next can often be so slow that you miss it until years later when you reflect back over your life. But every once in awhile there is a transition that is so abrupt and so devastating that you are acutely aware that a new season is starting.

On Easter weekend of 2017, I helplessly watched as a new season started not only in my life and my family’s life, but also the life of my beautiful little redheaded fireball, Hazel Elizabeth. It started when my wife, Elizabeth, took Hazel to our pediatrician for a follow up visit after she had finished a 10-day round of antibiotics for a case of strep throat. Nothing seemed abnormal at first and the check up went fine, but Elizabeth was still concerned that Hazel looked pale and our doctor was willing to err on the side of caution so he ordered bloodwork. Later on that day the doctor called Elizabeth and told her that Hazel was not in immediate danger, but that she needed to go straight to Nationwide Children’s Hospital (NCH) in Columbus and have more testing done.

My job takes me to industrial plants all across the country and is pretty much 100% travel for up to six weeks at a time. My team had recently finished a job early in Iowa and we were driving home with our company truck and tool trailer when I received Elizabeth’s call saying she was headed to the ER at NCH and could I meet her. Luckily, we were just passing through Columbus at the time of her call, so I was able to meet her on the road and stand by her through the terrifying events of the next few days.

Over the course of three days, Hazel was run through a battery of tests to help determine what was wrong with her. The initial blood tests showed she had slightly elevated white blood cell counts, low hemoglobin, and low platelet counts. While these results could present from a variety of different causes, the scariest one of course was cancer. By the time I arrived at the hospital, I had already read enough of the available research to know to be worried that leukemia could be a possible, if not likely diagnosis. As each test came back negative, but Hazel continued to remain pale and act lethargic, I dreaded what I felt deep in my heart was coming. I prayed so very hard that night for one thing and literally one thing only: please do not let me baby girl have Leukemia. I didn’t say cancer, I was specific, I said “Lord, please don’t let Hazel have Leukemia.” Over and over again I repeated this simple prayer and hoped against all odds that we would hear that she had a treatable infection, bacteria, or even a virus.

Alas, that was not destined to be the case. Over time we began talking to more and more oncology doctors instead of general attending doctors, they were slowly breaking us into the fact that it looked like Hazel was battling Leukemia. During this initial phase we met an oncology fellow that really connected with Elizabeth and I, and while very straightforward, she always remained positive with us and assured us that they had the capabilities to help Hazel battle this disease. She remains on our team today and we are so very thankful for her and her compassionate bedside manner that first helped us grapple with the concept of cancer in our tiny daughter.

We heard a lot of people say “The worst part is the not knowing.” when we were waiting for a diagnosis. For some that may be true, but for us, I don’t believe that was the case at all. As long as we didn’t know, we had hope. Hope for a different diagnosis beyond the word “cancer”. Hope for a relatively short hospital stay, some medicine, and then a return to normal life. Hope for something, anything else beyond a long road of chemotherapy, steroids, and roller coaster emotions for the next 2-3 years.

On Saturday, April 15^th 2017 that hope was finally destroyed for good. Our doctors filed into Hazel’s hospital room as she lay sleeping next to her momma. The oncology team slowly, compassionately explained that the lab results finally showed that Hazel was indeed suffering from Leukemia. More specifically, she has Precursor-B Acute Lymphoblastic Leukemia or ALL for short. Our doctors quietly held us as we cried, asked questions, and learned what life was going to look like moving forward.

This was without a doubt the worst day of my entire life. Some people say that you just “go numb” when you hear news like this but I didn’t. I felt everything. The range of emotions that hit me all at once is indescribable. I felt such an immense and crushing sadness, the likes of which I have never felt in any other situation in my life. The hurt ran deeper than simple emotion, deeper than my brain could fathom, and deeper than my heart could truly bear. This type of pain can only be described as being felt in my soul. The very fabric of being that makes up my life and total human consciousness, that which connects me to this world and the thereafter, aches.

This deep-seated sadness is not based in fear, its actually based in knowledge. Knowledge of the fight Hazel has ahead of her. Knowledge that I cannot take away any of her suffering. Knowledge that the new normal for my family includes the word “cancer” and involves hospital visits, precautions, medications, and scary side effects. I cry all the time. I wake up and cry. I cry telling people about her diagnosis. I cry watching my other kids on the playground. I cry when I’m alone and when I’m surrounded by people.

I hurt so much for Hazel, for my wife, my kids, my family, and yes for myself. Each day on this path is a hard journey and not one that I want to be on, but one that I accept and I own. My faith remains unwavering, I am sad but not depressed, I am not afraid. I have resolve and I will do anything that needs done to make sure that someday I will walk Hazel down the aisle and give her hand to some extremely lucky young man. Her red hair will be spilling out from underneath a white veil and she will be taking the first steps to starting and leading her own family. As she does, I hope that the path I am leading our family on during this trying time remains a poignant season of her life characterized by faith, support, strength, and love. So so very much love. 

Mark 14:36
"Abba, Father," he cried out, "everything is possible for you. Please take this cup of suffering away from me. Yet I want your will to be done, not mine."