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