Sena's Eyes ~ Retinoblastoma Awareness

Sena's story

When my second child was born I thought I was ready for anything because I had done this before. I was used to diapers and sleepless nights and I loved holding my son in my arms. My daughter was born a week before her due date and was a whopping 9 lbs. But she would cry whenever we had the lights on or the blinds open. I developed a spinal headache following my c-section so I didn’t mind the darkened room. This behavior continued for MONTHS. She cried when we went for a walk, went to the pool, drove in the car, opened the windows, etc. I wondered why I had a baby who wanted to live in a dungeon and repeatedly called my OB and pediatrician for advice. I got the same answer from everyone: “she has been living in a dark womb for 9 months and just hasn’t adjusted yet-give her more time.” I gave it time until I asked her pediatrician to take a good look at her well baby check up. Sena was diagnosed with bilateral retinoblastoma at four-months-old. Her pediatrician referred us to an ophthalmologist because she noticed a white reflex instead of red while performing an eye exam at her well-child exam. Sena began chemotherapy four days after diagnosis, on November 6, 2001, her brother’s second birthday. Every three weeks, we took her to the hospital at 5:45 a.m. and she would be put under general anesthesia. She would receive laser treatments to her eyes and then after she awoke she would stay over night and receive chemotherapy. Additionally, she had many hospital stays due to fevers, illness, etc. in between each treatment. She also had two blood transfusions due to low hemoglobin. Chemotherapy took a toll on her immune system and after four treatments she had to take a six week break because her white blood cell counts were too low. Her counts came up slightly and chemotherapy was started again but this time it had no effect on the tumors in her right eye and her ophthalmologist recommended enucleation (removal of the eye). The tumor was also covering the optic nerve which meant it could easily find its way to the brain, assuring a limited life expectancy. Sena’s right eye was removed March 4, 2002 and she completed chemotherapy one week later. We celebrated that she was a cancer survivor and made vacation plans to celebrate on her first birthday. But, at a routine eye exam two and a half months later, 18 new tumors were found in the left eye. They were in the vitreous (fluid of the eye) and could not be treated with chemotherapy and laser. Radiation was our only option. Sena began radiation on May 31, 2002. Every morning, Monday – Friday, we arrived at the hospital at 8:00 a.m. for general anesthesia and radiation. Radiation went by without incident. She completed radiation on July 5, 2002. Approximately one year later, Sena developed radiation induced cataracts. In 2005, Sena’s cataracts required surgery. This improved her vision, as a new artificial lens with correction replaced the old one. She wears glasses with bifocal lenses and correction and continues to have eye exams every 9 months. She has only central vision in her left eye but you would never know. She will celebrate 12 years cancer free this summer.

 

 

 

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