The Ultimate Betrayal

My breath felt hot against my face inside the disposable mask, which heaved out as each exhale attempted to escape the wet, wafery barrier into the surrounding air. I sucked in a long inhale and let out a sigh, trying to calm the jittery uprising in my stomach as I stared down at the clear syringe with its precise hashed markings. The glass cylindrical tube was filled with four milliliters of thick, clear liquid and tipped with a gleaming, stainless steel needle about an inch long and sharpened to a dangerous-looking angled point. The benign-looking contents of that syringe both terrified and fascinated me. It was filled with cytarabine, an antimetabolic agent that has been widely used to treat a variety of blood cancers and viral diseases since the early 1960’s. Simple in principle, but decisive in its action, cytarabine is similar to certain chemicals found in the human cell, which allows it to readily be incorporated into human DNA. Once in the DNA, cytarabine rapidly converts to a new compound that stalls cellular replication in the S phase of mitosis and perpetuates cell death. Quite literally, the replicating cancer cells are tricked into a state of stasis and eventually disintegrate. That’s the fascinating part.

The terrifying part is that, like many chemotherapy agents currently in use, cytarabine is not very specific. It is a poison on the cellular level and causes cell death in ALL dividing cells, not just cancerous ones. The most common side effects of cytarabine are low blood cell counts (white cells, red cells, and platelets) and suppressed bone marrow function. Given in high doses, cytarabine can obliterate the bone marrow to a near catastrophic level, which explains why most patients receiving these injections will require at least one, and most of the time several, transfusions during treatment.

I pulled the stretchy latex glove further onto my right hand, the blue cuff snapping against my wrist and startling me to action. Hazel began to whimper as I turned and gently pinched a couple inches of her skin on the back of her right arm. Using a small square of gauze soaked in alcohol, I swabbed the skin between my fingers for a few seconds. She was sitting on Elizabeth’s lap with her face buried in her mother’s chest, doing her best to block out what she knew was inevitably coming next. I picked up the syringe and waited for the alcohol to evaporate for just a few seconds more. If I were truthful, I was just stalling, working up the courage it took to inject my own daughter with a chemical cocktail I knew full well was going to wreak widespread havoc on her internal systems and bring her already fragile immune system to the precipice of collapse yet again.

I hesitated with the needle poised just above her skin, noting how perfect and unscathed the site of injection looked. Hazel’s skin is still the baby-soft, milky cream that all toddlers seem to be blessed with, her arm a smooth, picturesque landscape yet unmarred by the ugly disease that broils within her. In a halting, unpracticed motion I plunged the needle into her arm, sinking it to its base as I felt it penetrate through the outer epidermal layer and then further into the subcutaneous fat that lies just beneath the surface. I was surprised by how much of the trauma of the injection I could feel through the syringe and hesitated yet again before pressing the plunger down slowly to deliver the toxic chemical into her system. I counted, “One…two…three…four…five” before pulling the needle out of her arm and quickly covering the site with a small square of dry gauze. I deftly slapped a Trolls band aid on the tiny red dot of insertion and then tossed the spent syringe in the blood-red sharps container provided by the hospital.

Hazel was crying now, not out of pain, but instead of betrayal. Tears streamed down her smooth cheeks as she stared over at me from her mother’s lap, the look on her face not one of sadness, but complete bewilderment. I heard her ask her mother, “Why Daddy poke me?!”, as the two of them whisked into the living room to snuggle and comfort one another on the couch.

I stood in the dining room, shoulders slack, arms at my sides, staring blankly at the carnage of medical supplies laying in front of me. Opened gauze packets and band-aid wrappers littered the white disposable absorbent pad we used as a staging area for the chemo. Single-use needle caps were strewn across the pad, lying messily next to a bright yellow, resealable plastic bag with the word “Cytotoxic” stamped in large, nasty letters across the front. I pulled off my mask and gloves, then tore off the clumsy, blue chemo apron I was forced to wear while giving Hazel her injections. I wrapped up all the spent supplies into the absorbent pad and stuffed the entire, sterile smelling packet into the garbage can.

I immediately went to wash my hands, the last of the seemingly pointless ritual of relentlessly protecting myself from exposure to the medicine that I had just readily injected into my baby girl. As I let the hot water wash the suds off my hands and wrists, I stared at my tired face in the mirror. My eyes were bloodshot and sunken with dark circles beneath them. Deep set lines started at the corners of my eyes and radiated out like a spider web of worry, spreading across the lower portion of my cheeks and running into my unkempt beard. I looked terrible, aged, exhausted. No sparkle to my eyes, no smile on my face. I showed the signs of running on adrenaline-fueled fear for months on end, always focused on the next goal in the treatment cycle and hoping against hope to avoid visiting the Emergency Room for a fever or a scraped knee. I couldn’t help but think, “It’s not supposed to be like this. How did we get here?”

I finished washing my hands and then patted them dry on the coarse hand towel hanging on the rack. As I walked into the living room, I could hear Elizabeth and Hazel talking quietly, about what I wasn’t sure until I crossed the threshold and they both immediately turned to face me. Hazel came trotting over with a quiet pitter patter of unsocked feet and shot her arms straight into the air, indicating she wanted me to pick her up. Grateful for this peace offering, I scooped her into my arms and stood up. She threw her arms around my neck and squeezed tight, laying her tiny bald head on the top of my shoulder with her delicate lips pointed toward my left ear. Ever so quietly she whispered, “Daddy, I okay. It doesn’t hurt anymore.”

I felt sick to my stomach knowing what I had done, what I HAD to do to save her. Fathers are supposed to protect their daughters, to keep them from harm at all costs, but I was knowingly poisoning my daughter’s cells. I was taking her to the limits of her tiny little body so that hopefully all that survived the cellular onslaught were healthy, non-cancerous cells.

Our oncology team does a wonderful job of educating and preparing us for what can and often does come during this journey. But there are many things that they simply cannot predict; the intangible realities of living with an ever-changing and evolving disease. Seven months ago, I could not have known that a bout of chicken pox would put us in the hospital for eight days, followed by 7 more days of intense outpatient medication. I wouldn’t have guessed our Thanksgiving celebration would be bookended by trips to Nationwide Children’s Hospital for platelet transfusions because Hazel’s bone marrow was too decimated to create her own. And I never could have imagined the nightmare of having to deliver chemotherapy to my baby daughter in my own dining room.

The life we now live is filled with experiences that are only normal if juxtaposed against the lives of other families dealing with cancer. At times it seems we are living on a different planet in a far-off galaxy, the everyday normalities of our old life long forgotten as we trudge forward into new and unexplored caverns of self-pity, worry, and sadness. We watch from afar as other families continue with various parts of their normal lives, not out of jealousy or contempt, but oftentimes out of a type of detached curiosity. What does it feel like to NOT constantly worry about fevers, bug bites, bumps, scrapes, and bruises? How does everyone else have so much energy to do the things that they want to do? What does the freedom to go anywhere at anytime without worrying about ANC, platelet counts, and hemoglobin levels feel like? I honestly don’t know anymore what any of those things are like, such is the curse of never fully letting our guard down or relaxing.

Someday in the distant future, I hope we can once more know that kind of normal. I hope to never again have chemotherapy drugs enter my home or be delivered in my presence. I hope for a redemption for our family and healing for Hazel that is complete and everlasting. Most of all, I hope that someday Hazel will forget all she has gone through. I hope for these things, yet I cannot guarantee them. I have no way of knowing what tomorrow holds, but for now, Hazel’s sweet, angelic voice whispering in my ear is enough to keep me going.  

I nuzzled my beard against Hazel’s temple and lower my voice to a barely audible whisper, “Little one, I am sorry for your pain, but I am even more sorry that I have had to join the long line of those that hurt you. I promise this will all end one day, and I hope when it does you can forgive me.” She stared up at me, eyes twinkling and her tiny chiclet teeth gleaming as she grinned. My forgiveness was already granted, my pardon - assured. 

As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust…from everlasting to everlasting the Lord’s love is with those who fear him…” – Psalm 103:13-14, 17

A Time of Thanksgiving

 “Diiiiing!” The bell reverberated its alarm through the small concrete corridor, indicating the elevator car was about to arrive. The small white triangle above the cold stainless steel doors glowed bright white, pointing up almost as a symbol of warmth or hope for what was to come. “Shoooomph”, the doors slide open as the car haltingly comes to a stop and bodies begin to file out. The inside of the elevator car is a rectangle, perhaps four feet deep by seven feet long, but the capacity of such a small space seems to be expansive as each member of four different families exit the elevator, intent on finding their vehicles and heading home. We wait until the last person exits the doors and then I wheel Hazel’s stroller into the elevator. She sits quietly, patiently as her mother and I situate all of our bags filled with the “necessities” for a day trip to the chemo clinic.

Hazel is wearing a matching purple sweat suit with a bright pink pair of socks, no shoes of course. She never would have worn an outfit as warm or billowy prior to getting sick, but this has recently become a staple in her wardrobe. The elastic waistband of the pants provides enough give to avoid irritating the sensitive skin around her waist and the sweatshirt keeps her warm as we travel up and down cold hallways in the hospital. Hazel’s face is covered by a disposable mask decorated with Mickey and Minnie Mouse and her head is covered by her floppy Hello Kitty hat, a fairly unimpressive adornment considering some of the other options she has at home, but this too has become one of her favorites.

Made of cotton jean material with well-worn seams and a full brim to surround her tiny bald head, the hat has been more than a head covering these past few months. It has been a place of solace, a barrier to stave off the assaults of the sun and the whipping winter breezes, to keep prying eyes at bay, and to provide a look of normalcy when she stares at herself in the mirror. The hat allows Hazel to escape the realities of her world, if even just a little bit. Each time as I carry her into the hospital, she holds its brim down with both hands, pulling the material tight to her head and covering her ears to drown out the sounds of the bustling wards. Her hat is a safe place, a shield, a private room in an otherwise non-private life. She doesn’t use it to hide as much as she uses it as a filter to manage the visual and audible inputs to her life. The hat was a gift from a loving person on this earth, yet I will always think of it as a personal gift from God.

Several more people insert themselves into the elevator space with us in a cordial version of bodily Tetris, and the elevator doors begin to slowly close as a thin, white hand slides through the crease and sends the doors open again. A young man, no more than 18-19 years old jumps on the elevator and apologizes profusely to its occupants for holding us up. He looks around with a sheepish grin and presses the button for Level 2. “I got a new baby up there,” he says, and looks expectantly at each of us with his finger hovering over the buttons so he can press our floors too. “Eight please,” says a middle-aged man wearing the formal looking suspendered-slacks and bright blue button up shirt of the Amish or Mennonite faith. Two blond-haired boys peer out from under the protective shroud of his weather-beaten arms and his wife pushes a stroller with a tiny baby girl swaddled and sleeping soundly. She looks picture-perfect, save for the thin plastic tube that wraps around her delicate facial features and runs to a small metal canister housed in the bottom compartment of her stroller. The eighth floor is the pulmonary care unit and I can tell by the looks on the family’s faces that they have frequented this upward journey many times before now.

“Twelve, please”, a woman of about 65 says quietly from the corner. The new father presses the buttons for eight and twelve, then looks expectantly at me. “Eleven for us, thanks”, I say then look down at Hazel as she cranes her neck to see the Amish baby sleeping soundly in the stroller next to her.

“Wow, eleven and twelve, huh? The penthouse suites, I guess, right?”, the young man spits the words out without thinking and in a half joking tone that begets his naivety. I quickly meet his gaze and he can tell his words have caused some unknown pain, the glee on his face sliding into apologetic bewilderment. He drops his eyes to the floor and as the elevator lurches into its upward motion, I say dryly, “Yeah, not quite.” I know it’s not his fault, he is here to celebrate his new baby, high on the adrenaline of becoming a new father and focused on the vibrant feelings of being young and having a family. He has no idea what the other floors of this hospital hold, what untold horrors other families have experienced here. He doesn’t realize that as you ascend the floors of this hospital, into the ever higher stratospheres above, that the ailments treated become more and more dire, the circumstances increasingly grim.

We reach the second floor and the young man departs, giving one last furtive glance around the elevator as if to apologize without words to any he has offended. As the doors close and the elevator car once again begins to rocket upward, I am struck by the intimacy created by this mode of transportation. Each floor of this hospital is separated from outside access by numerous security measures, including guards, cameras, and electronic key cards. By default, if not design, those patients treated on one floor may never set foot on another floor for the entirety of their treatment, and thus are both physically and emotionally separated from what goes on eight feet above and three below them on a daily basis. The elevators connect all of those floors and provide one of the only places that patients from different wards can interact with one another.  The elevator is the vehicle of hope for all of us, regardless of what we are battling. We all board at the base level and then begin our journey toward the angels in the sky that can help our babies. It is no coincidence that the oncology floors at Nationwide Children’s Hospital are located the closest to heaven. It makes the commute for God shorter as he peers in each of those twelfth floor windows and keeps watch over his little ones that are suffering.

The Amish family quietly exits on their floor, the youngest boy trailing slowly behind and turning around to shyly wave at Hazel as the elevator doors close, and our journey upwards continues. “The top floors here aren’t fun places to be, are they”, the older lady says as the digital numbers on the floor display click by rapidly. “No they aren’t,” I say as I glance over at her. She is dressed comfortably and carrying a small bag with two knitting needles sticking out of the back side. She clutches a children’s book, the name of which I can’t see, close to her chest and looks up at the ceiling, as if she can actually see the next floor approaching. “I’ve got a grandson up there,” she says proudly. “I have visited this hospital every day for seven years. I’ve never seen him outside of his hospital room, but I believe someday that I will,” she says with a smile. I can tell she means it. I have to look away because the wave of emotions from that simple sentence is shocking to my system. I stand in stunned silence as I contemplate the devastating reality of this woman’s life and the sheer magnitude of faith that must live in her to continue to go on when faced with such overwhelming odds.

The elevator slows to a stop and the doors slide open to reveal H11, our floor, the oncology clinic. As we are exiting I smile at the older woman and she grins back, motioning toward Hazel, “They do amazing things on these floors you know. She’s going to be ok.” I sigh and choke back tears, “I know they do. Good luck.” She nods, the elevator doors close, and the car disappears, continuing its journey upward into the heavens.

The holidays are a time of reflection to remember all of the blessings in our life from the past year. During this time of year, we celebrate family, friends, wealth, health, and happiness. As we sit down to meals, we pray in thanksgiving and for continued blessing as the new year looms on the horizon, our minds alive with the possibilities of new beginnings and continued success. Sadly, I cannot truthfully say that I have rejoiced in every step of our journey this past year. I also cannot say that I am thankful for Hazel’s cancer diagnosis, for what it has done to her and to our family. But I am able to say that I am thankful for many things.

I am thankful for the attentiveness of my wife to our children, without which Hazel’s condition may have lingered longer and made her prognosis less positive. I am thankful for access to exceptional medical care and doctors that not only treat a disease, but love on their patients. I am thankful for friends that immediately stepped in to help our family the very day they heard of Hazel’s diagnosis, providing not only financial, but emotional and logistics support many times over the past months. I am thankful for a caring, close knit family that has helped us in so many ways at the hospital and at home. I am thankful for a church family that loves us and finds subtle ways to give us strength and encouragement during all phases of Hazel’s treatment. I am thankful for prayer warriors that continually lift my family to the throne of God and provide a blanket of safety and warmth in the harsh, cold days of our struggle. I am thankful for a job that has allowed me to be with Hazel for every check-up, every needle stick, and every chemo infusion.

But most of all, I am thankful for the good days, the days when Hazel laughs her deep belly laugh and flashes her bright, toothy smile and looks at me, eyes gleaming and full of life. The days when she runs through our living room and dives into the pile of blankets on the couch and giggles, “Daddy, snuggle me.” The days when cancer is not the first thing on our minds and all that preoccupies our life. I am thankful that we can still have those days, even as we await and prepare for the days of sadness and strife that inevitably follow.

As we all celebrate this holiday season, let us not forget those that are somewhere in the hallows of a lonely hospital ward, facing the inexplicable struggles of a condition they did not cause and over which they have no control. In those quiet, sterile care units are often found some of the strongest examples of faith you will ever see on this earth.

I will forever remember this year and the many struggles through which my family has traveled. Each event is scarred into my memory in ugly detail, a permanent memoir of terror, anguish, and pain. But I will also remember the good times: the beach trip, birthdays, celebrations, and daily snuggle fests. I will remember Hazel’s strength during this time and the people we have met during our journey. I will remember that even in the darkest of times when I thought I could handle no more, God never abandoned me.

From my family to yours, Happy Holidays and God Bless.

“Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory. Whom have I in heaven but you? And earth has nothing I desire besides you. My flesh and my heart may fail, but God is the strength of my heart and my portion forever.” – Psalm 73:23-26

A Father's Love

“Daddy, why you lub me?”

Hazel posed this question several times on our most recent string of overnight stays at the hospital, first for chicken pox and then a 24-hour stint to receive her next round of chemo. She says the question with a sly grin on her face and in a tone that hides a half-hearted attempt at laughter. She is teasing in her own way and loves to hear her mother and I try to put into words the true emotions that her question evokes in us.

I have yet been able to eloquently answer her question beyond the words “Because you are perfect, dear.” I stumble through saying it and then have to avert my gaze from her sweet little peach-fuzz covered head lest she see the tears welling up in my eyes. Such a short, simple question stirs emotions and explanations of such complexity, it is difficult to imagine that she could understand my true answer. And yet I hope she does understand, if not today at least someday in the future after all of the horrors of her current situation subsides.

Why do I love you, Hazel? The answer to that question lies deep in my being, rooted in my heart and connected to my soul. It may be a difficult concept to put into words, but today I will try. Hazel, this one is written directly to you, baby-girl:

I love you because you are a blessing; a wonderful gift from God that I cherish and marvel at each day. When you were born, you entered a family of five that didn’t realize we were incomplete. We were all there to witness your first breath and the first people you laid eyes on in this world were your siblings. I caught you as you were born in the very bedroom you now sleep, and your mother provided the first measures of comfort as you lay wide-eyed, taking in all the sights to the sounds you had heard for so many months in her womb. You were the first miracle that your brothers and sister witnessed firsthand, and you forever changed the course of their lives. They protect you fiercely, love you unconditionally, and cannot imagine a world without you.

You have tremendous compassion and are always thinking of others. Your mother and I have searched for ways to weather this storm over the past months and you have always been quick to comfort us, holding our hands as we trembled, caressing our cheeks as we cried. We have been broken, beaten since the day you were diagnosed. We are weary from our worry for you, but even though your body is the one being assaulted, you have always come to our rescue, like a tiny martyred savior delivering a message of serenity from above. You have calmed our hearts and assured us that all will be okay.  

You love life and have fun in any situation. Your laughs have echoed down the hallways of H12, crowding out the heavy silence that blankets the solemn corridors and closed doors. You bring joy to all around you and people beg to be in your presence. You have not once allowed your disease to dampen your spirit, remaining a beacon of light for others in even the darkest of times. Your giggle is infectious, your sense of humor unabashed. I love the crinkle of your nose when you smile, the dimples in your soft pastry-like cheeks, and your deep, heartfelt belly laugh when tickled.

You are strong, courageous, and daring. You fear nothing, back down from no one, and always speak your mind. You have a fire in your belly that begets passion and fuels your sense of adventure. Cancer does not scare you. You march into the hospital as if going to war, and in a sense you are, waging countless waves of battle on something you cannot see or comprehend. You withstand unimaginable pain with barely a whimper, remaining compliant with the throng of doctors, nurses, and specialists that constantly poke and prod you. The treatments you undergo are tough, often depleting you to a state of exhaustion and sickness that parallels that of the actual cancer that started all of this in the first place. It sometimes takes you weeks to recover from a round of chemotherapy, but you slowly, excruciatingly fight your way back to health and continue along the path set before you. I am unlikely to ever see a display of strength so great in the remainder of my lifetime.

You are a purposeful fighter with a love of family that is innate to your being. Tears stream down your face as your own parents deliver medications that will bring an onslaught of dismal side effects, yet you never complain, never fight back, never tell us to stop. You believe in us, having faith that we would never do anything that was meant to harm you. Even when you are weak, you beg to play with your siblings, drawing strength from their presence and vibrancy from their laughter. The best days of your life right now are when all of your “people” are together under one roof, living, laughing, and loving together as one.

Hazel, you are incredibly special and unbelievably blessed. You are the culmination of all things good in my life and forever have stolen my heart. I love you so much more than words can possibly describe and will spend the rest of my life working to make yours better.

My dearest Hazel, I will answer your inquiry with my own question, for it is not “Why do I love you?” but instead “How could I not love you?”

“For I wrote you out of great distress and anguish of heart and with many tears, not to grieve you but to let you know the depth of my love for you.” – 2 Corinthians 2:4

Angels in White Coats

“Jesus withdrew about a stone’s throw beyond them, knelt down and prayed, “Father, if you are willing, take this cup from me; yet not my will, but yours be done.” An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.” – Luke 22: 41-44

I have been in a church pew every Sunday morning since I can remember and spent many of my summer nights as a child attending gospel sings, revivals, and church picnics all throughout the Mid-Ohio Valley. I have attended small mountain-town churches, large, multi-service mega churches, Christian music festivals like Alive and Creationfest, and went to summer church camps each year since I was 10 years old. I grew up believing that I did not have a “testimony” because I didn’t need one. My faith was built over decades that spanned a lifetime and my relationship with God was created from knowledge gained from long-term personal studies. I did not have a single event in my life that I could point to as a defining moment for my faith and naively believed I never would…until Hazel’s diagnosis.

In April of this year, I had my world shattered, my legs cut out from under me by a direct attack on my child. She was innocent, unassuming, and pure, stricken by an invisible, insidious disease over which I have no control. The weeks and months since have been a mess of emotions as I and my family have attempted to adjust to this new reality and help Hazel focus on her battle with Leukemia. I have been forced to do little more than watch as Hazel fights for her life, enduring countless hospital visits, rounds and rounds of chemo, and side effects that have ranged from benign to disgustingly evil.

If there is an event in a lifetime that can serve as a defining moment, it is certainly a cancer diagnosis. As a parent, there is nothing that can prepare you for that moment. We constantly worry about our kids when they are healthy, but it reaches an entirely new level when we know they are sick, really sick. This isn’t cutting grapes in half so they don’t choke or ensuring they wear a helmet when they ride a bike, this is cancer. It's life or death. It's survival. A struggle of this magnitude demands our respect, weaves its way into our psyche, and changes us forever.

I have been told that our family’s story has given others hope, has strengthened their faith because we stand strong in our testimony during this trying time. I would love to be able to say that I am living my testimony now, that this experience has created in me a belief so strong that I can move mountains. But the truth is I don’t really know if that is accurate or not. Is it really faith that I have, or is it simply a crippling fear of losing my child to cancer? How can people look up to us as an example if what keeps us going every day is not just an unwavering faith in the good, but a deep understanding and fear of what the bad looks like?

Every day when I wake up, I am faced with the realities of eternal good and damning evil. The Devil lurks at my door waiting for the final chink in my already cracked armor that will allow him to fling an arrow at my tired heart. He searches for the final straw that will break the back of my camel, and allow him an avenue to destroy the foundation of the faith that I have spent decades building. Up to now, I have kept him at bay. Every good report from Hazel’s doctors vaccinates me a bit more against evil’s advances, and every setback brings me a bit closer to tumbling over the precipice into the abyss of despair.

I will always yearn for my life prior to Hazel’s diagnosis, I will reflect on this period of active battle with a deep-set bitterness, and I will cherish my time after with the utmost reverence for our blessings. Life’s defining moments hold an immense importance because we are given the choice of two paths: one path that allows extreme heartache, pain, and fear to crush all that is good in us; the other path uses our pain as a catalyst of antithesis, providing spiritual growth and strengthening in the face of true adversity. Our path is still being formed, and at times, just like Jesus in Gethsemane, we beg for our cup to be taken from us. But also like Jesus, God often sends us angels to help strengthen our resolve and grow our character.  

I know that angels exist on this earth. I have witnessed their works and felt the hand of God delivered through them daily. I know several angels by name and have developed deeply personal relationships with them during Hazel’s journey.  My family has been hugged by them, consoled by them, we have laughed with them, and cried with them. Many of the angels that have visited us have come cloaked not in a ring of light, but in white coats. Our most recent visit came on Tuesday, following our latest admission to the hospital for Chicken Pox.

A doctor from our original attending team found that she had a rare day off. A day of rest from the constant pressures of 12-hour shifts in one of the busiest hospitals in the world, and one that normally would have been spent catching up around her house or spending time with her husband. Instead of spending Tuesday at home relaxing, our angel chose to come into the hospital and spend six hours in a full gown, respiratory mask, and gloves visiting and comforting Elizabeth, Hazel, and I as we were quarantined in our room on H12. This individual has only known our family for eight months, but calls all our children by name, has sat listening intently to each of our birth stories, and constantly tells us that our blog is a beacon of faith that helps keep her strong as she continues caring for all the little ones that enter NCH’s doors. She is but one angel in a sea of white-coated angels, but she is a special one to us.

I don’t know that our story is one of spiritual triumph and I don’t know that we are the best examples of strong faith, but I do know we see more of Christ each day through the examples of others. Our experience with cancer has created holes in our hearts, but it has also surrounded us with beautiful people. People that give of themselves freely and work tirelessly to do good in the face of the evil in our world. People with big hearts, unyielding compassion, glowing empathy, and focused ambition to save lives. These people, these angels, are God’s gift to us in this trying time and they have forever changed our perspective on the world. We are forever in their debt.

“The Spirit you received does not make you slaves, so that you live in fear again; rather, the Spirit you received brought about your adoption to sonship. And by him we cry, “Abba, Father.” The Spirit himself testifies with our spirit that we are God’s children. Now if we are children, then we are heirs—heirs of God and co-heirs with Christ, if indeed we share in his sufferings in order that we may also share in his glory.” – Roman 8:15-17

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