A Dad by Any Other Name

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Unknown Strength

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

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

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

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

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

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

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

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

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

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

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

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

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

A Mother's Love

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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