My Daughter’s Central Line Was Her Lifeline

“‘CareAline’ became my version of a lifeline.”

Our daughter June laid still on an operating table awaiting the placement of a Broviac-Hickman dual lumen central line. Her eight month old body was riddled with cancer. Just two weeks earlier, I had found a tumor in her abdomen. A day or two before the line was scheduled to be placed, we had received the diagnosis that our precious girl had high risk neuroblastoma.

The line entered June’s chest cavity wall, curling up over her clavicle, and protruded from her dainty neck creating a silhouette of plastic tubing before it dipped back down into the subclavian vein and disappeared from sight. It was positioned perfectly next to June’s heart where it would deliver toxic chemotherapies created for adults with cancer, but titrated, so they didn’t take June with them when they left her system. It would deliver continuous morphine and antibiotics. Later in treatment, it would provide June with the nutrition she needed when her body didn’t have the strength to wake itself from slumber. During transplant she slept for a continuous week, twice.

There were too many days in the last year of June’s life when the only interaction she had with the outside world was through what the line actively provided to her, and every ounce of love I could energetically squeeze from my cells and give to June. At times, I can still feel my cells are in denial as they continually wring out every last bit of love for June, despite her being gone.

The central line after June was diagnosed with cancer became a lifeline.

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If you’re anything like me when it comes to your children, managing and caring for the last little bit of the umbilical cord before it turned black and fell off was enough of a worrisome task. I constantly fretted that the scab caught on the onesie as I lifted it to change the diaper. Blood! Should I clean it? Cover it? “Where did I put that hospital paperwork with the care instructions?” I’d think as I rummaged through the changing table.

I should mention, I’m a nurse, but when it came to caring for my children’s wounds, the lights in my brain flickered and went off. The reaction to my children’s potential pain left me virtually inept.

The day I found the last little bit of black umbilical cord, as I sorted darks from lights on the floor in front of the washer in the basement, was the day I could finally breathe. That was it. It was the end of the worry.

“Should we save it?” I too eagerly asked my husband later that evening as I pulled a Ziplock baggie out of the kitchen drawer and dropped our firstborn’s bellybutton scab in it. His face contorted at the thought, while my face beamed with novice parenthood naivety.

It was a rhetorical question because of course I’d save it. It represented the first bit of pain and suffering my daughter and I had endured together. A scab trophy. A symbolic sliver of proof that my child was once physiologically tied to me.

One day I’d staple the baggie to her baby book so she could have it, although likely, the treasure would be lost on her. At least, until she herself became a mother and realized the weight a tiny umbilical scab could carry.

The umbilical cord that once attached June to me was her first lifeline.

When you only have the delicate, yet important, motherly experience of caring for a bellybutton scab, try to imagine the horrors of caring for a central line.

Apprehension peaks just after laying the child atop the changing table while unsnapping the onesie and carefully lifting it over previous wounds to reveal the latest and greatest.

First, it was the umbilicus.

Then, it became the central line.

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There are aspects of a central line that don’t compare to anything else. Unlike a healing belly button on its worst day, you can’t ignore it until it goes away. Quite the opposite, you must nurture and give it attention to sustain your child’s life.

A central line becomes a baby of its own that requires individual care and attention apart from your child during a time you are devoid of energy.

Like a ship with only a hull, I was empty and exposed. Every floating fragment which I passed by throughout the day spilled into me with the sea and sank me deeper. Before nightfall, each day, I was inevitably drowning, again. One day in life of pediatric cancer was too much for this mother ship to sustain. When June received her line it was like a layer of concrete on the floor of my hull.

A central line is a lifeline. Ironically, a central line, when not properly cared for, is also a death line. I carried the burden of June’s line with me as I floated aimlessly awaiting a beacon in the sea of pediatric cancer.

A beacon, I was sure didn’t exist.

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The day June was in surgery receiving her central line, my husband and I sat huddled together facing the door in her hospital room. We were told someone would visit us with instructions on how to care for the line.

A nurse practitioner rapped on the door, walked in, and sat down in front of us. She handed us a book which she instructed we take home and keep in a highly accessible place. She suggested we study it, and in the very least, keep it near for reference. We spent about an hour reviewing it together.

An hour which I could only think about June and when she would be finished with surgery. The inherent and incessant need to be with her at all times became my life.

We reviewed the key points.

No matter what, if June had a fever of 100.4 F or higher, it warranted a call to the oncologist. It might signify June had an infection related to the plastic foreign body sitting inside of her vasculature. A bacterial infection was life threatening. Protocol was to take zero chances.

I had yet to open the pediatric cancer textbook that was given to me when June was formally diagnosed days before. I imagined this one joining that one in the lightless closet in my kitchen on the somber shelf of denial.

“Keep it out of and above her diaper line,” was one of the last ominous instructions the nurse practitioner gave us.

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When we returned home, I carried the dense handbook upstairs and pushed open the closet door in the kitchen, as planned. I slid the book onto my repurposed bookshelf and shut it behind me. I walked back downstairs to greet June and my husband as they entered the house.

I carefully unclipped and lifted June out of her carseat. She shrieked in agony. I cradled her in my arms up the stairs and to her room. Gingerly, I laid her down on the changing table as I had done so many times before, but this time felt reminiscent of the day we brought June home from the hospital for the very first time. It was as if I were meeting my June in her new home, all over again.

I gazed down at her, my beautiful baby fresh from surgery, as I very slowly and very carefully lifted her tiny shirt just as I had once done when her belly button was still clamped, only seven and a half months before.

The new version of me was meeting the new version of my baby, both of us brand new.

I was reduced to the hull.

The line was hideous. It was angry and unnatural. It was sutured into her impeccable infant skin.

The doorbell rang. Later, when I eventually opened the door, I saw a large cardboard box which was filled with heparin and saline flushes, green antiseptic caps, alcohol pads, gloves, and yellow Kelly clamps.

As I placed each supply in an individual bin and slid it onto the shelf next to the handbook and pediatric cancer book in the closet, it occurred to me that one day I might have to accept this as my life. I carried one small bin of mixed supplies upstairs to June’s room where I organized them on her changing table.

The line, which came out of June’s chest, split into two long white plastic tubes, called catheters, which when they were loose, dangled just below June’s waist. The catheter ends were closed with a special tip called a lumen which prevented bacteria from entering the line. In nursing school, we referred to the lumen as the “hub”. June had two lumens, which was useful for delivering more than one medication at a time.

It was only a matter of hours before one of June’s diaper changes that I noticed the lumens sitting inside of her diaper.

My eyes darted for alcohol pads on the changing table. I tore several open and began to ferociously “scrub the hub”. Had anything entered the lumens? How could I possibly know? I couldn’t see microscopic bacteria! I’d have to wait and watch for signs of infection.

I cried.

I couldn’t bear to live with myself had I put June through something extra and unnecessary.

I taped the lumens up, away from her diaper. They didn’t stay. I stuck an adhesive clip that was given to us in clinic on her midline to the left of the umbilicus, and fed the line into it, snapping it closed over the rubber tubing. It seemed to work.

Then to my dismay, several days later, the adhesive started breaking down June’s skin. An open sore became visible at the edge of the tape. We were due to begin chemotherapy. Soon she would have had no immunities to heal a wound such as the one left behind by the fastener.

Each week in clinic, the nurses and I brainstormed other ways to finagle the line away from her diaper. We tried moving the clip to a less angry area of skin. It gave June’s skin temporary relief until the irritation began again.

‘Temporary’ is the mantra of daily life with pediatric cancer for better and worse. I wish I had understood it then how ‘temporary’ applied to life.

Each time June went to the bathroom, panic set in.

Sometimes the line would fall out of the clip and hang outside of her onesie. I’d readjust it so it didn’t get yanked out.

Every time I set her down, I’d feel for her line. Before I lifted her up, I’d check for the placement so I didn’t pull it out. I feared she might pull on it herself.

The line was a constant, nagging stressor. As if June’s cancer diagnosis wasn’t enough to be concerned with, the line constantly challenged me. June depended on it to complete eighteen months of treatment, but I couldn’t envision how it would survive those eighteen months. Especially, as she grew more mobile with age.

A few weeks into having the line, I Googled “How do you secure a central line from coming out of baby’s clothes?” and a few sites populated.

I didn’t expect to find something that existed for my exact problem. I idiotically assumed if there was a solution, I would have already been given it.

The remedy I speak of is called CareAline, which, amongst many things, included a wrap designed specifically for tucking central lines safely away on the body. They were designed specifically for children with cancer.

With astonishment, I reread the site. I couldn’t believe that there was a family making products like this for children like June. I clicked on and scoured all the links on the page. There was a video of a mother discussing why she and her partner started the business of CareAline.

I wasn’t alone.

There were others.

Other moms with children who had cancer.

Other children like June with neuroblastoma.

There were people who walked this brutal path and suffered at the same obstacles June and I had. With pediatric cancer, the obstacle is the only way forward.

CareAline became my version of a lifeline. For me, a hopeless mother, I had my first tool to prevent my child from acquiring a preventable bacterial infection that could kill her.

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I purchased several CareAline wraps. Immediately, the wrap reduced my concern for infection when the line no longer threatened to dive into June’s dirty diaper or fall out of her clothing and get caught or torn by little baby hands, or by Mama’s big hands, as I lifted June’s fourteen pound body for the one-hundredth time of the day.

After June died, I’d find the CareAline wraps in drawers or boxes of doll clothes, scattered throughout the house. My older daughter used the wraps on her babies when we no longer could wrap them around June.

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A year after June died, I volunteered at a bereavement retreat for those who have lost a child to cancer through an incredible organization called Rett’s Roost.

I said goodbyes to the familiar faces I’d met since June’s departure, and gathered my belongings which included an enlarged framed photograph of June I’d brought in with me for the altar of children who had been taken by cancer. I stepped out onto the porch where a couple stood in the corner talking. I hadn’t yet met them. We exchanged hellos, and in the same breath, the man told me the photograph of June in my arms reminded him of his daughter.

I held up the photo for the three of us to admire.

They said their daughter had the same beautiful and deeply wise eyes. She, like June, had passed away from neuroblastoma.

When I learn another parent has lost their child to the same exact devastating disease as I have, I stay. I linger. I engage. When in front of me stands another person who actually understands what June and our family have endured, I try not to wrap my arms around them and smother them with my tears and rage. Although, I know they get the rage. The natural spring of endless tears. They have suffered alike. Have dreamt. Have hoped. Have abandoned all faith the day their child died.

Yet, here they were.

They were alive.

There is nothing in the world like meeting another person who has the lived experience of the most devastating loss and still chooses life.

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It was their first bereavement retreat with Rett’s Roost. Their daughter had passed away over ten years prior, and they were working on gathering resources for families and placing the links on their website.

“What’s your site?” I asked.

“It’s spelled Care-A-line,” the woman said. “We offer PICC sleeves and central line wraps for kids — ”

“You make those?” I asked, stunned as my world with June collided with my present day.

“Yes,” they said in unison.

A beacon.

There I was, broken and alone after I’d lost June. Suddenly, standing with very first people who, unbeknownst to them, helped me understand that I didn’t have to fight June’s cancer journey alone. They had been a part of my and June’s life for years.

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When I was alone with June and her terrifying new cancer diagnosis, the panic-inducing line, and the new books on the shelf that felt like concrete when I’d pull them out, in a world turned dark, I was offered a tool to help me cope with the circumstances.

The wrap arrived in the mail. I pulled June to me on the floor and hugged her to my body. There were no more guarantees in life. I placed the CareAline wrap around her tiny chest. Then, I slipped the double lumens into the skinny pocket that was designed perfectly for them.

The wrap was more than just a piece of purple or blue fabric. It symbolized hope. A sudden ledge which appeared in a vast ocean when the tide had momentarily drained. I pulled my hull onto it for temporary relief. After temporary reprieve, I’d be able to keep going.

Then, I made dinner for the first time in a long while. I felt so much love and adoration for June as I watched her play that wasn’t shrouded in fear. My worry had been replaced with hope. It allowed me to be mom and have a break from being caregiver.

“June, we got this baby. We got this,” I said.

And for the first time since the doctors told me she had cancer, I truly believed it.

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Meeting the incredible people who created CareAline after June passed was more than just a meeting, it was a design in itself by destiny.

It wasn’t a matter of coincidence. It felt as if the universe wrapped itself around me and whispered in my ear that I was exactly where I needed to be. Faith reappeared in the wake of losing June.

“Thank you for what you did for me and June and for families like ours,” I said through tears. “I could never properly express my gratitude.”

The memories of June and I sitting on the living room floor stacking cups in the last months of her life replayed in my mind. Those carefree moments in the midst of chaos were what kept me going.

Those moments were everything.

I’ll never get that time back, but I’ve got the memories forever.

It excites me to think that new memories, which have yet to be made, might have everything to do with June.

Meeting the couple on the porch at the bereavement retreat makes me believe that despite June being gone, she’s showing me everything will turn out exactly the way it was meant to be.