A Vignette of Life as a Pediatric Cancer Mom

Her faded sweatshirt read, “we need darkness to see the stars.”

I met Ashley yesterday while hiding in the hallway just outside our room. I had been fighting with August for at least 20 minutes to keep his pulse ox on his toe and oxygen connected to his trach. I was at my limit. I had been crying and needed to step away for a moment. You know the headspace you get when trying to console a newborn at 3 a.m. for the 20th time? That’s where I was. Except I was fighting with a three-year-old cancer and stroke survivor. I was exhausted and defeated. He was relentless.

Ashley was sitting on the ground in the doorway of the room next to us, encouraging her son, Pierce, to take steps in the hallway.

Meeting parents on the oncology floor is an exceptionally weird experience. It feels a little like a college dorm in some ways. Everyone is shuffling around in their sweats and pajamas, bags under their eyes, and usually mumbling something that sounds like, “more coffee.” The whole vibe is strangely familiar but in a backward, twisted kind of way. More like a dorm in The Upside Down from Stranger Things or the nightmare version of déjà vu.

But, Ashley and I exchanged smiles that made space for us to exchange pleasantries.

“How long have you guys been here?” I asked, making small talk.

“About six and a half weeks. You?” she replied.

“Only a week or so this time, but we spent many nights here on this floor a few years ago,” I explained.

I know the darkness that her shirt referenced. I’ve slept in it. I’ve tried to manifest positive outcomes with my tarot cards in it. I’ve been consumed by it. Nearly three years ago, the life that I had poured myself into creating most of my adulthood was obliterated within a few hours. Thankfully, that memory is burning into my mind more like a dream these days than a threat, but I still recognize it when I see it.

“He’s so sweet. How old is he?” I asked.

“He just turned two at the new year. He was diagnosed just a few days before his birthday.”

“Do you mind me asking about his diagnosis?” I asked, nodding to Pierce.

“He has stage four liver cancer. But it has metastasized to his lungs,” she said.

“I am so sorry. Can I give you a hug?” I asked. I could see her vulnerabilities flickering in that moment.

“Yes!” she replied without hesitating. We became instant friends.

As we got to know more about each other, it occurred to me that this was still their first stay in the hospital since finding out the news. The first six weeks. The first six weeks of this new life that only a few people come to know. Where were we during the first six weeks? They are a blur now, but there are things I won’t forget in that time. Those early days stay with you even if you can’t remember them in detail.

I do remember the layout of the room in the trauma ICU. I remember the consultation room we were taken to learn about August’s prognosis. That was the room in the back corner of the floor so no one could hear me scream, at least not clearly. I remember the couch I laid on during his surgery, where my sister rubbed my back and ran her fingers through my hair as I lay curled in a trance.

I remember the neuro recovery room we stayed in after he was stabilized from surgery. I remember meeting August’s oncologist for the first time and being told “he already knew who we were” and that he had been following this case from the moment he was admitted. I remember asking him if trying to continue breastfeeding would give my son a better chance at beating the odds ahead of him.

Ashley is just starting this journey with her son, but I could see the burning flame inside of her. She is still in those first six weeks. Her soul has been lit on fire. She is a mom fighting for her son and demonstrating to him at the same time his capacity to fight as well. She is evolving, in real-time, into a force that will power her family for the long journey ahead. I see myself in her. I was in her shoes nearly three years ago and still am stoking that fire.

You don’t have children and expect them to traverse an obstacle like cancer. You expect scrapes, bruises, maybe broken bones. At baby showers, you joke about “all the trouble your little boy will get into,” but you aren’t suggesting they fight for their life. You expect bullies and heartbreak and lessons in trust. You don’t expect what comes with a cancer diagnosis, like chemo and radiation. Those kinds of things aren’t for children.

Our day eventually blurred into night, which you don’t notice the same way when you’re in the hospital. I swear that time moves differently here. Somewhere in between Twitter searches for updates on the impending world war, the late-winter ice storm, and respiratory treatments, I fell asleep. I woke to muted voices casting shadows on the wall. It was 3 a.m. but something was going on.

I stepped out of our door to see the clinically bright lights on in my new friend’s room. The door was wide open and a team of hospital staff was in the hallway. Somehow, I got a text from Ashley.

“I’m sorry if I’m keeping you up,” she said.

How on Earth did she have the ability to text me while her son was the center of everything in that moment? I should be the least of her worries.

Stunned, I replied, “Omg, no worries at all. Is everything okay? Do you need anything?”

“No, we are headed to the ICU,” she explained.

“I am so sorry, Ashley,” I replied. I know better now than to say anything more in these moments.

“I’m so worn out. How did you do it?” she asked.

I typed out so many responses to that question. This time, for these circumstances, she needed validation and a reminder of self-care before anything. She needed to know she is not alone. She’s allowed to feel scared, tired, and sad. And she’s allowed to take care of herself.

I said, “It is exhausting. You need rest. Will you be able to get some?”

What I didn’t say – but wanted to tell her – is that truthfully, I didn’t “do it.” I did what I had to do to support August and our family, but any sense of accomplishment about what we experienced feels inauthentic; for me at least. The primary accomplishment belongs to August.

The only genuine answer I could give is that I just survived; alongside my son. That was all I could do. And that is enough.

And she will do it too.

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General HealthA Vignette of Life as a Pediatric Cancer Mom
Erica Johansenhttps://linktr.ee/ericaolenskijohansen
Erica’s work has proven that personal storytelling and community building can spark connections, productive conversations, and meaningful industry change. Throughout her career, she has led marketing strategy, corporate communications, business development, and online community management for several companies in the healthcare and emerging technology sectors. After completing her bachelor of arts in public relations from Xavier University, she started her career with a market-leading healthcare integration engine vendor where she launched and managed #HITsm (health IT social media), one of the first social media communities that brought healthcare IT professionals, providers, and patients from across the industry together. As a recognized speaker for national events such as HCIC and HIMSS conferences, Erica covers topics including patient engagement, patient experience, caregiver support, and how to leverage social media as a thought leader. She has also served as a board member for organizations including DFW HIMSS and Social Media Dallas. Additionally, Erica is a dedicated philanthropist and community leader. She completed the Emerging Leaders in Philanthropy program through the Communities Texas Foundation in 2019, maintains her partnership with Social Venture Partners Dallas, and recently launched a non-profit, August's Artists, to provide hospitalized children and their families with access to coloring materials and artwork that inspires healing.

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