Our First Lifeline
Two weeks after the tumor was biopsied and June diagnosed with cancer, she went in for a second surgery. A surgery to place a central line. If you’re anything like me, managing and caring for the last little bit of the umbilical cord before it turned black and fell off my newborn's belly button was enough of a worrisome task. I constantly fretted, did it catch on the onesie while I pulled it up to change their diaper? Oh no, there’s blood! Do I clean it? Just soap and water, right? Where’s the hospital paperwork with the instructions? Finally, “Oh, shit! Where did the belly button go? It’s gone.” I’d find the last little bit of black umbilical cord as I was sorting darks from lights and loading the washer. That was it. The end of the worry. “Should we save it?” I asked husband as I dropped our firstborn’s scab in a Ziplock baggy. I envisioned one day stapling it to her baby book.
Caring for a central line was similar to caring for a newborn’s belly button, in a few ways, however. The initial anxiety it provokes in a parent is similar. Questions like, “What am I supposed to do with this?” and “How do I take care of it?” arise. You’re advised not to submerge either in water or they can be a source of infection. With June, we were sent home with the clamp still attached to her umbilicus because of a massive clamp removal shortage due to Covid. “They’ll remove it at your first week appointment. Just be aware of the clamp, so not to rip it off.” The nurse said as she read our discharge instructions. Worrisome? Nah. Like a central line, you’re afraid to touch it, know you must clean it, but can’t seem to bring yourself to even look at it.
There are aspects of a central line that don’t compare to anything else. Unlike a belly button, you can’t ignore it until it goes away. Quite the opposite, you nurture it for it’s and your survival. For a mother of a child with one, a central line becomes a baby of its own requiring individual care apart from your child. You must bathe your child once daily to prevent infection. Again, if you’re anything like me, you loathe a daily bath. One or two weekly scrubs are good enough for this mom. A central line requires weekly dressing changes in clinic only for itself. It requires twice daily saline and heparin flushes performed by caregivers, like moms or dads. A central line is a lifeline. Ironically, a central line, when not properly cared for, is also a death line. I carried the weight of June’s line with us everywhere we went.
As June received her central line, a Broviac-Hickman, husband and I were given a one-on-one course in June’s hospital room on the care it necessitated. A nurse practitioner gave us a handbook which she instructed we take home and keep in an accessible place. It was a handbook she suggested we study, and if not, keep close because we may have to refer to it on a regular basis. I had yet to open the pediatric cancer textbook that was given to me the week before when June was diagnosed. I imagined this one joining that one on a back shelf in a dark closet. However, that was not an option, I soon came to learn. The line that entered June’s chest cavity wall and curled up above her clavicle, protruded from her dainty neck and dipped back down into the subclavian vein, positioned perfectly next to June’s heart demanded I read the book. To keep June alive. “Keep it out of and above her diaper line,” was one of the last warnings the nurse practitioner instructed us on.
June received weekly blood products through her line. Chemotherapies and adjunct medications were administered through her line. The line prevented her from being poked multiple times, every time, we were in-patient at the hospital, or out-patient at the clinic. There are many challenges to placing an IV in an infant’s vein, something I quickly came to learn and dread. To avoid holding a baby down and sticking, sticking, sticking them with needles until their veins, arms and legs are bruised black and blue, is to be victorious. They won’t consequently lay limp in your arms afterward, exhausted from the fight, not understanding why adults torture them. You won’t have to cradle your baby in your arms noticing the remainder of their fight visible in the small pools of tears on the examination table. The smallest victories carry the greatest significance in the daily life of a child and their parents going through cancer treatment.
When we took June home, we were forced to accept the burdensome and newest member of the family. I carried the dense handbook up the stairs and pushed open the closet door in the kitchen. I slid the book onto my new, hidden bookshelf and shut the door behind me. I walked back downstairs to greet June and my husband as they came through the door. Welcoming our new babies home, I so carefully unclipped and lifted June out of her carseat. She squealed in pain. I carried her up the stairs and into her room. Gingerly, I laid her down on the changing table. Slowly and carefully I lifted her tiny shirt. There it was, a Broviac-Hickman double lumen central line. Double lumen means there are two ports of entry. Double lumen meant double the care.
That night a large cardboard box was delivered to our front step filled with heparin and saline flushes, green antiseptic caps, alcohol pads, gloves, and yellow Kelly clamps. I placed each supply in an individual bin and slid it onto the shelf in the closet in the kitchen next to the handbook and pediatric cancer book. I took one small bin of mixed supplies upstairs to June’s room where I organized them on her changing table. I placed one set of Kelly clamps in the visible tray on June’s changing table, one in the silverware drawer and one in her diaper bag. If June’s line should get caught on something and tear or break, Kelly clamps would (amongst other things) prevent air from entering her vein, a potentially fatal consequence. They were the extinguisher to the fire. The tourniquet for a wound. Kelly clamps might save her life. I tried not to think about it too much.
The next time I undid June’s diaper to change it, I noticed the lumens sitting inside of the diaper. My eyes darted for alcohol pads. I tore several open and began to ferociously “scrub the hub”. Has anything entered the lumens? How could I possibly know? I can’t see microscopic bacteria! I’ll have to wait and watch for signs of infection. Oh no, please, no, don’t let June get an infection. I couldn’t live with myself putting her through something else. I tried to tape the lumens up, away from her diaper. I stuck an adhesive clip at her midline and fed the line into it, snapping it closed over the rubber tubing. Several days later, the adhesive started to break down June’s skin. An angry open sore became visible at the edge of the tape. In clinic we brainstormed other ways to finagle the line away from her diaper. We tried moving the clip to a less angry and red area of skin. Temporary relief.
June went to the bathroom and I’d panic as I unbuttoned her onesie. Sometimes the line would fall out of the clip and hang outside of her onesie and I’d panic. Every time I set her down on her playmat, I’d feel for her line. Before I lifted her up, I’d check for the placement of it so I didn’t pull on it. I feared she might pull on it. The line was a constant, nagging stressor. June depended on it to complete the next eighteen months of treatment, but I couldn’t envision how it would survive those eighteen months.
I Googled “How do you secure a central line from coming out of baby's clothes?” and a few sites populated. What I didn’t expect to find was that something existed for this exact problem. It’s called a CareAline which, amongst many things, included a wrap designed specifically for central lines. Specifically for children. Specifically for children with cancer. I reread the site. There is a community of people out there making things like this for children with cancer. I clicked on all the links. I scoured every page. I watched the videos on the website. It was the very first moment I had realized I was not alone. There were others. Other moms with children with cancer. Other children like June with neuroblastoma. There were people paving a path for those of us who are suffering our first steps on a road where the obstacle is the only path forward. It was as if I was on mile twenty and exhausted but really the race had just begun, and suddenly in the distance there was someone holding a sign with our names on it. They had water. They were making sure we weren’t running this race alone.
I purchased several CareAline wraps. Immediately, the wrap reduced my concern for infection and provided me with great relief. June’s line sat securely inside the wrap and was no longer threatening to dive into her 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 in the day.
In the last year after June died, I’d find the CareAlines 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.
Several weeks ago, I volunteered at a bereavement retreat our family attended last summer. As I was leaving, I walked outside, and saw a couple standing on the porch. We exchanged hello’s. The man saw the photograph of June I was cradling in my arm. He told me she reminded him of his daughter. They shared the same beautiful and deeply wise eyes. We started chatting and the topic of support groups for bereaved parents were at the forefront of the conversation. The kind and gentle man mentioned to his partner standing next to him that they should add a particular group to their website.
“What’s your website?” I needed to know.
“It’s spelled Care-A-line,” she explained. “We offer PICC sleeves and central line wraps for kids…” I could no longer hear what she was saying and with no restraint interjected.
“You make these?” I asked.
“Yes.” They responded.
Here I was, standing with my community. They didn’t know it yet, but they’d been part of mine for years.
When I was alone with my baby and her new cancer diagnosis and her new line and the new books on the shelf that felt like concrete when I’d pull them out, in a vast world turned eternally dark, I was offered a hand. In the hand, was a wrap. I took the wrap, and pulled June into me placing it around her tiny chest. I slipped her double lumen into the little pocket that was perfectly made for it. Then I made dinner for the first time in a long while because I didn’t have to keep such a close eye on June. As I stepped back from her sweet self set up in the wrap, sitting on the playmat, she smiled at me. I smiled back for the first time in a long while and said, “June, we got this baby. We got this.” And for the first time since the doctors told me she had cancer, I believed it.
