My Last Nursing Job Was For My Dying Daughter

“I knew I’d never save her from the cancer, but in a day, I was given many opportunities to keep her alive.”

“I think it’s time to call the nurse,” my husband said.

“For what?” I asked.

Why would we need a nurse if June was no longer here? It had been twelve hours since I handed June, our eighteen-month-old daughter who passed away from neuroblastoma, wrapped in her pink blanket, to my husband who carried her into the night. She was taken away in an unmarked black vehicle. She was gone. The struggle, the fight, it was over. Just like that, our lives with June ended.

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Who could possibly need a nurse? They had no business with us. I was done with them. I was also pretty sure I was done with being a nurse. Not only June’s nurse, but a registered nurse (RN). If I couldn’t be June’s nurse, I’d be no one’s.

June was the greatest nursing job I’ll ever have. Daily, I walked the tightrope of being both her mother and nurse. A rope so taut, I‘d never be one without the other.

Often, I was asked to give June the exact care I’d given my patients when flushing her lines, administering injections, or drawing up medications. I’d be hovering in front of June on the verge of a blackout, and the nurse within me would say, “Remember, you can do this,” as she had throughout my years as a novice nurse.

I trained myself in the years of nursing school to not panic, to draw on knowledge, and to remain calm.

Nursing school trained me to care for June similarly to the way a yoga class trains our bodies to breath. It became second nature. Yoga teaches us to breathe through difficult situations, and to not allow our minds to cloud our abilities.

Similarly, the hours of hard work and school trained me to care for June as I’d cared for so many patients. I could rely on muscle memory to complete daily tasks. It was all fine, until the mother creeped into my nurse brain.

“Remember, you can do this,” the nurse in me would nudge when I went to flush June’s central line and wanted to back down, walk away, scream into a pillow.

The nurse brain wrapped in the mother’s heart was nothing I’d ever experienced before. The mother had to step aside for the nurse to do what she did best. But she couldn’t, they were one.

Completing a task was no longer only a task as it had been with my patients. The lens had changed. I was not the nurse caring for a patient, I was the mother caring for her daughter which predominated the nurse in me.

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“The medication, Taryn. They told us to call them to come pick up June’s medication,” my husband said.

“Oh,” I said, still sitting on the couch I hadn’t left since they told me three days before that June was going to die because the cancer relapsed.

When the nurse knocked on the front door, I didn’t get up. Instead, I stayed sitting, thirty-two weeks pregnant with our son, staring out the window.

“Where are the medications?” I overheard her ask my husband.

“Hun, are all of June’s medications in the coffee cabinet?” he yelled to me.

The coffee cabinet was transformed when June became sick. It started with storing bits of medications on the bottom shelf which once held bags of coffee beans and Nighty Night teas. Somehow, all these years later, and devoid of coffee, we still referred to it as the ‘coffee cabinet’.

“Yes,” I replied.

“Do you have a bag of coffee grounds?” I heard the nurse ask my husband.

Ironic. I stopped preparing coffee when June became sick. Instead, I used a Keurig.

Everything in the coffee cabinet was forgotten, and eventually pushed to the side as the list of medications grew. I purchased a bin to safely and neatly store the medications in the cabinet. Soon enough, the medications overflowed into other areas of the shelving. The bin became too small to hold every medication June required to stay comfortable while at home.

The oxycodone was for the pain and discomfort caused by the cancer. The tumor that grew from June’s left adrenal gland, had pushed vital organs aside, including June’s left kidney. It obliterated the adrenal gland. June’s abdominal aorta was forced to circumvent the tumor. On the x-rays, the abdominal aorta, the major artery delivering blood to the lower half of the body, which normally is straight and runs down the center of the abdomen to the pelvis, was in the shape of a ‘C’.

There was oxycodone for the bone pain. After the cells in June’s body were destroyed with each round of chemotherapy, they’d regenerate inside of her bones, within the marrow. An injection given to June prior to leaving the hospital after each round of chemotherapy stimulated cellular regrowth at an unnatural rate. June’s body was working overtime to recreate itself and sustain her life in her tiny bones.

Think of an explosion within your femur, and magnify it, then apply it to almost every bone in your entire body. It lasts at least a week. It takes no breaks. It’s difficult to mask with narcotics. June couldn’t describe the pain with words, but she conveyed it to me with her eyes, by gritting her teeth, and through horrific cries.

There was Zofran for the nausea. A cherished medication. Often, when we stood at the cabinet, I’d line up everything I had for nausea. Like I used to do with my patients medications before I carried them to their room. Taking inventory.

As I referred to my daily notes of administered meds to make sure I wasn’t double dosing, June would point to the Zofran every time. “Eh, eh, eh” she insisted as she nodded her head, “yes.”

“I know Junie, but you’re not due for that one yet,” I’d tell her, and my heart would break, as I fell back on my nursing knowledge after contemplating whether a little extra Zofran would hurt my baby suffering from debilitating nausea.

Long term and misuse of Zofran can cause a prolonged QT interval where the heart takes longer to electrically recharge between beats. I know this because I am an RN. When June was prescribed Zofran, it wasn’t the first thing that came to mind, but after continual administration and the constant need for more, the worry set in.

At the end of the day, I was June’s mom and without any other option, I had to also be her nurse. Knowledge was power, but it became dangerous when it magnified my worry. Much of which I would have been oblivious to without a nursing background.

Worrying about the issue that stood in front of me was enough to kill a horse. As treatment unfolded, the what if’s spurred by my nursing knowledge branched off every situation, creating a briar patch of worry. It was difficult to tell where one worry ended and the other began.

………………..

“There should be a bag of ground coffee in the cabinet where the meds are,” I told the nurse as I rounded the corner into the kitchen.

“What is it for?” I asked. Suddenly, it seemed like such an odd request.

“To waste the liquid medications,” the nurse said.

It hurt too much for me to consider the nurse emptying June’s Zofran into a bag of coffee grounds because next to me tangled in the briar patch of worry, was June. She and I had been in a heaping mess of survival for almost a year. In the hours since her death, I couldn’t tell where she began and where she ended. These medications were a part of June. They were a piece of the middle of the road. Where she and I still existed, together. Where we plotted our escape of what this terrible life had become.

Getting rid of June’s medications felt like June dying all over again, which is why in part, I imagine the nurse offered to come and take them away for us.

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All day, every day, including twilight hours, for ten months, June and I walked up to the coffee cabinet to retrieve the morning, midday, and evening medications. Every six hours we stood at the cabinet. Sometimes, we stood at it every four when June was really in pain. Other times, every two, when the medications were staggered.

I stored bigger syringes to feed June drops of water like a Mama bird when she was dangerously close to dehydration that might require hospitalization. There was extra tape for the NG tube that kept threatening to pull out of June’s nose. There were multiple thermometers. I kept a set of bright yellow Kelly Clamps in case June’s central line tore or broke in half, as a precaution. The clamps could save her life. Momentarily, I, June’s nurse, might save her life.

I knew I’d never save her life from the cancer, but in a day, I was given many opportunities to keep her alive. She danced so closely with death, that the mother in me forced the nurse to stay on duty twenty-four hours a day.

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With every new day, I became June’s nurse when I opened a daily journal, pulled out various medications, and began drawing them up. I made a list of the medication with the time I administered it in a notebook I kept on the counter just beneath the cabinet.

I had flung the cabinet door open so many times that the screw was continuously loose. The cabinet door hung by a thread. My husband reminded me to tighten it, but I didn’t. I couldn’t. It wasn’t that I didn’t care or want to. It was that every time I walked up to the cabinet my mind was racing as to what to administer next. June had just thrown up for the fifth time since she woke up only three hours before, what could I give her? June was wailing in pain, but I’d already given her a dose of oxycodone, what else could help? Open, shut, open, shut. Much like the door to the medication room at the hospital I used to open fifty times a day. In those moments, I was a nurse running for my patients’ relief. It was no different with June.

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It hurts to think about caring for others after June has died. I have a recurring dream that I’m standing in the hospital again. I am wearing a white lab coat. The little girl in the bed in front of me isn’t June, but her bald head shines like June’s did after a bath.

The little girl is smiling at me. There’s another child in the bed next to her, and another, and another. The room is filled with beds. I wonder why I am here and what I could possibly do for these children. I long to help them. The lab coat I’m wearing makes me think I might be able to. I want one of them to be June or at the very least, to tell me they know where she is. I scan the beds with my eyes again, but she’s never there.

I wake up with the desire to be everything I was to June again, including her nurse. There’s a magnetism within my bones to the life we led when June was sick. I’m unsure this will ever go away. I’m sorting how to integrate it into my life, today.

I changed career paths and enrolled in nursing school at age thirty. It was the same year my husband and I were married. The career was calling to me. It was a difficult choice to make, but it wasn’t a coincidence. Everything has its time. It’s all part of the plan.

Once, I chose my role as a nurse. Then I chose to become a mother. I never wanted to nurse my child, but when I gave birth to June the two roles bled together. I have unbelievable gratitude for the knowledge I acquired when I went to nursing school five years before June was born. I am so glad I was given the opportunity to care for June. I’d have it no other way. I’m sure no mother would.

Maybe the plan was to become a nurse to care for June and to resign thereafter. Or maybe the nurse within me didn’t die when June did, as I often feel she has. Perhaps there’s another story there for her in the future. I’ll just have to wait and see what calls to me next. Nothing in this life is wasted.