Story & photographs provided by Toni-Marie H.
Back in June of this year Sara’s father, Steve noticed a white glare in her pupil. I said, “Well her 4 year visit is in October, so we will see then.”
While on vacation to the Outer Banks at end of August, beginning of September, it became more prominent. Very noticeable.
We returned on September 6th. I called and had an appointment with our pediatrician on September 11th. They said we needed to go downstairs to the eye doctor. We made the appointment for the next day. We knew already from some research that it was either Retinoblastoma or Coats’ Disease. After her appointment the doctor said, “It’s not good.” And he let me look through the eye thing. What I saw was frightening. Her left eye was cloudy white with lots of particles. I knew then that it was CANCER, we just didn’t have the final diagnosis. He called immediately to Shields and Shields and had our appointment for first thing Monday morning the 15th.
Sara had to go through horrible, and I mean horrible testing. No ‘almost 4-year old’ should have to go through this. And there my husband and I sat helpless as our baby girl screamed and cried that she wanted to go home.
As Carol Shields was doing the exam she was stating things for the staff to write down. When I heard, “Large mass, no hope for vision” I fell apart. When they were done, I grabbed my baby girl and cried with her. She had one more test, the ultrasound, to determine the size of the tumor: 24 mm.
As we waited, we knew for sure it was CANCER. Dr. Shields came in and confirmed it all. Sara had no vision in her left eye. It was consumed by this devil. Since Sara never shown signs of her vision loss we believe that this tumor has been there almost her whole life and she has just compensating for it.
On Thursday, September 18th we had her left eye removed. We did not want to put Sara through chemo and radiation if there was not a guarantee that she would beat it or regain vision.
Sara had a rough time waking up from anesthesia. She is a very strong girl. Always has been. She tore out her IV and then a little later tore off her patch. After some more ‘giggle juice’ she fell asleep and rested. When she woke up she was better. Still did not want to wear the patch, but she did. Her father wore one as well to help her through it all.
Today, October 8th is 3 weeks post-surgery. Sara is back at school running around and being crazy as ever. The kids in her class are in awe of her clear eye and she says that the doctor is just gonna pop a new one in.
Last week we got her results and they believe that the CANCER was not aggressive and did not spread. We know this is just te beginning, but our little fighter will continue to win this battle
Our next step is her temporary prosthetic and her semi-permanent one. We are currently fighting with the insurance company but we will win that too.
Thank you to Wills Eye for taking this devil out of our baby girl and saving her life.
wow, i’m so sorry through all that you have to fight the insurance!! thats terrible!!! stay strong, fight the good fight!
Such an inspiring story of an amazing little girl that did not let this disease win! And to two of the most strong parents I have ever met, your strength and power to help her over come this truly saved her life!!
You have a strong little girl ! My son Luke , now 18, was diagnosed at 8 weeks old. Left eye removed. By the grace of God is doing great ! Plays basketball, baseball , wrestles and umpires. I would recommend Kevin Kelley for a prosthetic. We have been to 3 and he IS the best ! Best of luck to Sara and your family !
What a brave little girl! So sorry she is having to go through this. I have a friend from elementary school who has a prosthetic eye, and she never let it slow her down. Good luck to little Sara with her upcoming procedures!
Hey Toni!! What a inspiring story for the people who are suffering for the same disease. Sara will be a good symbol of fighter against such problem.