I first noticed something different with my otherwise healthy and happy six month old daughter in June of 2018. Jaeden was laughing and playing in her stroller when I noticed her left eye was red and irritated. I assumed she had accidentally scratched her eye or had an eyelash in it. But upon looking closer, I realized the iris was a different color, it was now brown while the right eye was the usual greenish blue. Jaeden was not fussy or upset, so I was not overly concerned and decided to discuss it with her pediatrician the next day at her wellness visit.
The following morning I pointed out Jaeden’s red eye and color change to the pediatrician. The doctor performed a thorough red eye reflex exam looking back and forth into her eyes as if comparing the two. After finishing the exam, she looked at me and I could immediately sense her concern. She explained that Jaeden did not have a reflex in her left eye. She explained that this lack of reflex could be caused by a cataract or blood in her eye, but one of the other reasons could be Retinoblastoma, cancer of the eye. She told me that Jaeden needed to be seen by a specialist as soon as possible. Despite a rising panic within, I forced a calm demeanor and tried to focus on the less serious explanations for her symptoms.
The very next day I took Jaeden to Columbus Nationwide Children’s Hospital in Ohio where we met with a pediatric ophthalmologist. Here they attempted to dilate Jaeden’s left eye to have a thorough exam but found that her eye would not dilate. Concerned, the doctors numbed her eye and performed an ultrasound to determine the cause of her issues. I watched the screen as they examined her right eye and then her left. Even to my untrained eye, I could see the difference. One eye looked hollow and one did not. After the exam the doctor delicately said the words no parent wants to hear, “I’m sorry. It’s a tumor.” Jaeden was diagnosed with Retinoblastoma.
The doctor began talking about the possibility of removing her eye and explained that a MRI would be needed before the procedure. She then asked if I wanted a second opinion. I tried to contain my emotion but It was all so much to take in. I hugged my daughter to me as I began to cry. But knowing I needed to be strong for Jaeden, I regained my composure and began to pray that we caught it in time. I told the doctor that I did indeed want a second opinion given the severity of enucleation. She agreed.
As I headed back to our home in Lima, my phone rang. It was the oncology department at Cincinnati Children’s Hospital wanting to schedule our appointment for a second opinion. They had been informed that Jaeden’s case was urgent and wanted to know how soon we could be there. I told them I could be there the following morning.
The next morning was very emotional. During the entire three hour journey to Cincinnati I prayed. I prayed that she would survive no matter what was coming our way. I had to force back tears more than once, but was determined to stay strong.
Once in Cincinnati we were checked in and taken to an exam room where we met with the ocular oncology team of Dr. James Geller. Dr. Geller’s team was very informative and gave me a thorough overview of Retinoblastoma. Jaeden later had an MRI and in just a few hours after we had the results, her Retinoblastoma diagnosis was confirmed. I was told that Jaeden had an aggressive Grade D tumor. The doctors explained that the pressure in her eye was so significant that radiation was not an option. She had very limited vision in her eye as well. The team was convinced that immediate enucleation was the best course of action. They explained that waiting any longer could risk her life. With those words, I felt a sudden peace with the decision to remove her eye. Two days later, on the morning of June 23rd, Jaeden’s eye was enucleated. She also received laser and cryotherapy during the surgery. The doctors were very hopeful that they had removed all of the cancer cells.
However, just three weeks after surgery I received a phone call that terrified me even more than cancer. I was told the biopsy showed Jaeden’s cancer had already spread into her optic nerve. We needed to return immediately for more testing to begin the first of six rounds of chemotherapy.
Chemotherapy was not easy for Jaeden. During the first rounds, Jaeden needed both a spinal tap and bone marrow aspiration. But the most difficult time came after her 4th round when Jaeden suddenly became violently ill. She spiked an extremely high fever and could not keep anything down. We rushed her to their local emergency room in Lima. Here they attempted to stabilize her but Jaeden became increasingly listless and her fever would not break. Dr. Geller arranged for an ambulance to bring Jaeden back to Cincinnati Children’s hospital where it was discovered that she had developed a bacterial infection in her bloodstream stemming from her chemotherapy port. Her port was removed and replaced and with antibiotic Jaeden slowly recovered.
Just one week before her first birthday, Jaeden received her final round of chemotherapy and was finally able to ring the bell declaring its completion. Since that day, Jaeden has had no sign of cancer developing anywhere in her body! Her right eye remains cancer free and her vision in that eye is very good.
Four years have passed and Jaeden is now 5 ½ years old and has officially become part of the survivorship program. Jaeden is just starting Kindergarten in a new school. She loves her family and friends. She enjoys Karate, music and crafts. Jaeden will have annual exams and blood work for the rest of her life to make sure her cancer does not return. Despite receiving most of her treatment at such a young age, Jaeden struggles with severe anxiety related to her battle. She specifically struggles with the removal and maintenance of her prosthetic. I hope that with maturity and therapy, Jaeden will learn to care for her prosthesis without this fear and anxiety.
I am very grateful that I noticed the changes in Jaeden’s eye and that her aggressive cancer was found in time. Her journey has not been easy, but Jaeden is a warrior and I am in awe of how strong and resilient she has been through it all. I hope that by sharing our story another parent will recognize and act on what may seem to be very insignificant changes in their child’s eye.