Last year at the beginning of the pandemic, Celeste was diagnosed with sporadic unilateral retinoblastoma with a grade D tumor at 20 months old. Celeste underwent multiple exams under anesthesia and multiple forms of chemotherapy.
We started with three rounds of intravitreal chemotherapy. Her tumor showed that she was responding to chemo so then we went on to three rounds of intra-arterial chemotherapy. With the six cycles of chemotherapy, it still wasn’t enough and the tumor showed regrowth.
In September of 2020, we started our journey of systemic chemotherapy. Her tumor showed it was responding to the chemotherapy but at the same time, the tumor she had in her eye was very aggressive. It was a tough battle for Celeste but she finished her seven rounds of systemic chemo.
Within two weeks of finishing chemotherapy, her next exam showed that her tumor regrew back to almost the original size. At this point it was obvious there were no more options left for us so we opted for Celeste to have an enucleation (surgery to remove the eye.) It has now been two months since the surgery and we are trying our best to raise a little girl with confidence to show her that it’s okay to be different.
I first noticed something off about Celeste when I took pictures of her with a flash, her right pupil would reflect a white cast. I didn’t know then that this was a sign of cancer. The main symptom that caught our attention was from the age of four months we noticed our daughter had a lazy eye. We would bring this up to our pediatrician at every well-baby checkup but our pediatrician told us that this was normal and she will “grow out of it.” I asked our pediatrician to refer us to a specialist but she said it wasn’t necessary. A year went by and our daughter’s lazy eye only progressed. I asked again to be referred to a specialist and our pediatrician finally listened. Once we met with the ophthalmologist, she knew right away something was wrong. Our ophthalmologist referred us right away to Children’s Hospital Los Angeles where they then confirmed it was retinoblastoma.
I am angry for my daughter that she had to endure such aggressive treatment it could have been avoided with an early diagnosis. My daughter’s eye could have been saved. I am angry at myself for not being more persistent. I should have fought for my daughter harder but I know there’s no way I could have known it was cancer. That’s why today I am an advocate for childhood cancer.
Celeste is a firecracker. She has endured so much in just her little two years of life and I think she deserves the world and everything good it has to offer.
Hope session by Violet Summer Photography | Instagram