Lyla was diagnosed with (non-hereditary, unilateral) Retinoblastoma at just 10 weeks old. Her father and I noticed a sort of glow in her right eye and knew something was off. We took her to the pediatrician who noticed there was no red reflex present in her right eye and suggested we see an Ophthalmologist immediately. She was diagnosed with cancer the following day. By that time, the tumor was already covering 80% of her right eye. Had it gone unnoticed, the tumor would have gotten so big that it would have traveled through the optic nerve and metastasized to her brain.
Lyla has had multiple surgeries/ MRIS/ EUA’s (examinations under anesthesia), the first being at 10 weeks old, including port placement/ removal surgery. Because her tumor was so advanced before being removed, pathology recommended preventive chemotherapy. She began 6 rounds of systematic chemo at 3 months old. Miraculously, Lyla was pretty unfazed by chemo and had hardly any symptoms! I was happy to be able to breastfeed her throughout her entire course of treatment. The hardest part was probably dealing with her port and making sure it was always clean and out of her reach so she couldn’t mess with it at all, along with the weekly blood count checks/ appointments during the 6 months of treatment. Lyla had to be monitored very closely, as any sign of fever for whatever the reason meant an instant hospital trip and 48-hour stay. By the grace of God, she never had a fever or needed any blood or platelet transfusions and never had any sort of reaction to the chemo meds. It is absolutely mind-blowing how strong and brave these little fighters are! She has routine MRIs every 6 months for 2 years post-treatment. After that, she will do in-office checks annually with her Ophthalmologist.
Lyla is an only child so her father and I were able to devote our undivided attention and pour every ounce of love, faith, energy, and strength to getting her through this journey. We of course had good and bad days and tried to remain positive, knowing that we wouldn’t have to withstand this storm forever. There were times I didn’t even know how to feel but I knew I had to be strong for her and be there to give her whatever she needed to feel loved and comforted at all times.
I am happy to share that Lyla was officially declared cancer-free on January 28th, 2020. I often think about what the conversation will be like when she is old enough to understand what she went through so early on in her life. It is crazy to think that one day I will have to explain what she went through, while she had no idea what was going on. I am eternally grateful that she is a survivor and I will be able to get the opportunity to tell her the journey she went on and what a brave baby she was! She is and always will be my hero!
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