“How much time do we have until your oncology appointment?” I asked my younger sister Emily as we approached Boston Children’s Hospital on a hot August morning. We were walking past the Fazzalari Sky Bridge, a bridge that we as kids looked for any excuse to walk on. “About half an hour,” she replied. As we got closer to the hospital, we started to pass nurses and doctors in scrubs crossing the street to get to other buildings. People in lab coats with ID badges walked with us in the direction of the hospital. That’s how you know you’re close. We decided to wait in the lobby. It had been a while since I had been back at Children’s. Since Emily had been treated there, I had only been in the building a handful of times. As we pushed through the front revolving doors, not only did the air conditioning hit me all of a sudden, but the look of the hospital. The lobby had completely changed since I was a regular visitor. A giant screen with a colorful image of a jungle with giraffes and zebras had replaced the area to get food and drinks. The seats, once designed with different colors, were now just a solid blue and were sectioned off with partitioners. The aquarium where I used to look for the fish in Finding Nemo was noticeably missing a few of the cast members since I had been there. The sounds of coughs and footsteps echoed throughout the building. It seemed much smaller now, but I’m older and when you’re a child everything seems much bigger than it really is.
Fourteen years ago, my sister was diagnosed with high-risk neuroblastoma. I spent almost every weekend visiting her for a year and a half. Every weekend she looked less like herself. She lost her hair and weight, her eyes were swollen and black and blue, and her voice even changed. I can’t remember specifically the first time I learned Emily had cancer. I can’t piece together a single conversation I had with my parents where they told me what she was sick with and what they were doing to make her better. That’s because that kind of conversation can’t happen just once all together. To tell a six-year-old who had no concept of what death was that her little sister had a 50/50 chance of surviving would’ve been too much. So they tried to tell me the bits and pieces they thought were necessary for me to somewhat understand what was going on, but not enough to scare me into thinking I would lose my only sister. My mom now recognizes that this tactic of trying to sugarcoat everything and keeping me in the dark may have scared me more than she realized, but at the time, I think she just didn’t want to overwhelm me. I do remember a few different times when the adults in my life tried to explain to me what was going on in a way that I would understand.
Growing up I loved the television show Arthur on PBS. One day, we watched an episode about how the lunch lady, Mrs. McGrady, at Arthur’s school got cancer. The show used an analogy of weeds in a garden being cancer in the body, and how chemotherapy kills the weeds, but in the process also may kill some healthy flowers. After this episode, my mom took me to the end of the driveway where we waited for the school bus to pick me up. “So,” she said, “what did you think about that episode of Arthur?” She tried to sound casual, but I wasn’t buying it.
Without skipping a beat, I said, “I know why you’re asking me. Emily has cancer like Mrs. McGrady. But I don’t want to talk about it.” Another time, my grandmother decided to read me a book one night. My parents had gotten me a children’s book about a boy and his younger sister who had cancer. I can still remember the illustrations showing the sister getting chemotherapy and resting while her brother reads to her. We got about halfway through when I told her, “I think I want to stop reading now.” My grandmother didn’t push it. I knew what my limits were during this time when it came to talking about Emily. When I felt like the adults in my life were trying to figure out how I felt about my sister’s cancer, I shut down, never wanting them to see how scared I was. The fear came from not knowing what would happen next to my sister, and in turn, me. I tried to downplay what was going on because the thought that Emily could be more than “sick” was terrifying. Six-year-old me thought that not talking about cancer would make it less powerful. Looking back now, I see how powerful it was.
When I was approaching middle school, one of my best friends at the time Leah had a younger brother Jesse. Both Jesse and Emily were three when they were diagnosed with neuroblastoma. It was shocking that two children who lived in the same small town both had this rare cancer a few years apart. The town rallied around Leah’s family and helped in whatever way they could just like they had when Emily was sick. However, after many long years of fighting, Jesse passed away during my freshman year of high school. That day, my dad picked me up from school, drove me to where my mom worked, and they told me. I was devastated. Even though we knew Jesse had been struggling for a while, a part of me deep down always thought he would get better eventually. Emily got better, so he could too. This was my first realization that Emily’s illness was a big deal. Treating cancer wasn’t going into a garden and taking out some weeds. It was a tumor on her adrenal gland, surgery, transplants, radiation, and experimental therapy to get rid of the bad cells. What happened to Jesse could’ve easily happened to Emily, which even when I was six I think I realized at one point but buried the thought, unable to process such a wild concept.
One day in my first-grade class during Emily’s treatment, a boy in my class came up to me. He told me that his grandfather had cancer and died, and Emily would die too. He didn’t say it to be mean, it was more a point of fact. He thought he’d do me the favor of letting me know what happens when someone has cancer. The boy in my class only knew what his parents told him, just like I only knew what my parents told me. The day the boy told me Emily was going to die, I waited for the right time to ask my mom about it. While she read books to me that night, I asked her point blank if Emily was going to die. My mom picked her words carefully, knowing that one wrong word would make me shut down and end the conversation. I couldn’t tell you what she said exactly. Something about my sister being strong and at the best hospital with the best doctors. She used the word medicine, which she did often to let me know what was helping Emily get better. The words my parents chose to use to describe Emily’s illness downplayed what was actually going on. Emily wasn’t just taking medicine, she had two stem cell transplants that almost killed her. She wasn’t just sick, the chemotherapy was tearing through her four-year-old body, leaving her with lifelong insecurities she still deals with daily. Using the word “sick” to describe what was going on with Emily backfired. That winter when my grandmother got sick with the flu, I assumed she was “sick” like Emily and got scared. “Sick”, “medicine”, flashes of reading pages, and scents and images of that hospital live deep inside of me.
As I was waiting in the lobby, I noticed the smell of the hospital. It was the one thing that hadn’t changed in over a decade. It’s a smell I could recognize anywhere and yet one that would be hard to describe if someone asked me. It had that sterile smell that every other hospital has. But there was another lingering smell, one that no matter where I would smell it I could tell you where it was from. It’s what Emily used to smell like when she was allowed to come home for a short period of time. It’s the scent that was in the hospital hallways when we went to walk around the rooftop garden that no longer exists. It lingered in whatever hospital room Emily was in as we ate chocolate pudding and watched Phineas and Ferb. And after fourteen years, it’s still there.
While I waited for Emily I took deep breaths and felt like I was six years old again, waiting in the lobby to go see Emily. I was already starting to not notice the smell anymore. I guess deep down it’s still as familiar to me now at twenty years old as it was to me at six. The lobby, bridge, and aquarium that all once seemed so big looked so much smaller now. The memories of Emily fighting cancer were much bigger, reminding me now of what I could’ve lost back then. In a time warp, it came to when Emily waved that she was ready to go. I got up in a daze. Before we went through the double doors, I took a deep breath in, not knowing when I’d return and be transported back in time. With a lifetime of perspective from that lobby, I hope that was my last time.
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Isabelle is a natural at storytelling. This poignant narrative brought me right into the intersection of youthful innocence and adult delicacy dealing with childhood cancer. It’s a great read for both parents and children.
A powerful story and writer. Her experience brought to life with great reflection and perspective.