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