We learned Ella had cancer when she was four months old. I was changing her diaper one night when I noticed a glow in one of her pupils. Instead of black, her pupil reflected a whitish yellow underneath the overhead light in her room. The glow was only visible from a certain angle and was barely noticeable, even my husband couldn’t see it.
Even so, nothing can stop me from googling a minor health concern, so later that night I found an article about a mom who had noticed her son’s pupil glowing in a flash photo and later discovered it was cancer. I took a flash photo of Ella and there it was. As a hypochondriac, I’m all too used to the internet telling me I probably have cancer, so I tried to remain calm but scheduled an appointment with Ella’s pediatrician the next day. She reproduced the glow and referred us to Wolfe Eye Clinic right away.
At this point, I was getting nervous but assumed it must be cataracts or some other non-life threatening eye issue, recalling back on the time I went to my own doctor for shortness of breath and left with a prescription for Xanax.
After a quick exam, the doctor at Wolfe delivered the news after detecting very little vision in her right eye: “There’s something back there, and it’s not a good something.” I’ll never forget how hearing that made me feel, as if someone had unplugged a drain inside of me and my life went rushing out. He went on to explain that Ella had a cancerous tumor in her retina, known as retinoblastoma. I couldn’t believe that my small baby, who had just gotten here on earth, already had a disease so many of us fear throughout our lives.
He also told us in this moment that her cancer was 95% curable, information I had already read the night before in my Google rabbit hole. Even as I’m writing this, I wonder if I have the right to describe feeling so dark and empty when others are told this information without the “95% curable” caveat.
The thing I struggled with most in those initial days was trying to understand why this had to happen to her. I remember asking my husband if she was just too perfect. I also remember thinking I’d be sad and worried for the rest of my life. It’s funny how emotions seem so permanent when you’re experiencing them; I should have known that’s not the case since just months before, the overwhelming postpartum period came to an end after I assumed I would feel completely underwater for the rest of my child-rearing life. I read on another parent’s account that the initial shock and grief wane when you jump into the action of cancer treatment and that’s true.
Retinoblastoma is rare with only about 300 cases in the U.S. each year. The doctor at Wolfe told us we could go to Iowa City or to Philadelphia or New York where they see more cases like Ella’s. We immediately researched the pros and cons of East Coast vs. Iowa City, and intra-arterial chemotherapy vs. systemic vs. enucleation.
Dr. Larson, Ella’s ophthalmologist, talked to us for close to an hour on the phone that day, (which amazes me now after witnessing his schedule at the hospital,) helping us weigh the options, discussing each honestly and openly. Dr. Seblani, Ella’s oncologist, also talked with us about the chemotherapy regimen she recommended and what we could expect going forward at UI. We decided to go with University of Iowa, not because we both went there, or because it was closer to our home in Des Moines, (we would have gone anywhere to get her the best treatment,) but because Dr. Larson and Dr. Seblani made us feel assured and important.
At the time of writing this, Ella has completed 4 rounds of monthly chemotherapy, laser treatment and exams under anesthesia. Her tumor has shrunk in half, and her side effects from chemotherapy are minor. Each month gets a little harder as she becomes more aware of her own agency, but again I feel undeserving of complaints as I can’t imagine having to explain the scary world of treatment to a toddler or older child.
There are still moments when the “why her” feelings creep back in, but these days I mostly feel overwhelming gratitude. Gratitude that she was born in a decade where modern medicine allows her to live. Gratitude for every person who has researched, donated to, volunteered for or dedicated their lives to childhood cancer treatment. Gratitude that her treatment is working.
If you’ve made it this far, you’ve realized this is more my story than Ella’s because she is a normal, happy 8-month old baby who happens to go to the hospital once a month. There are fish tanks at the hospital (so cool) and an iPad to watch when your port is accessed (bittersweet.) She will not remember her cancer treatment and her parents will never forget the amazing, compassionate, life-giving people at the Stead Family Children’s Hospital.
- Ella’s Mom