Diagnosis: Retinoblastoma
Amanda and Scott remember noticing a Glow ever so often in their daughter, Amber’s, right eye when she was as little as two weeks old. “The Glow” would appear much as a glow appears in a cat’s eye, a yellow-greenish iridescent glow within the pupil.
Amanda knew that a glow was not normal, per se, and while it was never present during Amber’s wellness-visits at the pediatrician’s office, she mentioned it at every visit just in case it would register as something major.
Each and every time, the doctor would say that everything was okay. When Amber was about 23 months old, her right eye started to veer like a “lazy” eye. Since Scott also has this issue, they did not think much of it. At Amber’s sister’s next wellness-visit, the pediatrician noticed Amber’s eye veering and mentioned that it was time for her to see an eye doctor to help strengthen up her eye musculature. Shortly thereafter, they took Amber to see a highly rated optometrist, Dr. Phillip Vito, in their hometown of Holly Springs, North Carolina.
Scott and Amanda both agree that this appointment with Dr. Vito saved their daughter’s life. It was not long into his examination that he explained that Amber had a very serious condition. He did not diagnose her there, but told them to take her to see a specialist in Raleigh that afternoon. He explained that Amber may need to have one, if not both, of her her eyes removed that very night.
The specialist concurred with Dr. Vito’s assessment and diagnosed Amber with bilateral Retinoblastoma. She had tumors within both of her eyes, with the right eye being more severe. They were sent to Duke University Hospital where they met with an eye specialist, Dr. Buckley. Again, her RB diagnosis was confirmed, and a plan was developed to treat her with six rounds of systemic chemotherapy. This plan was started immediately.
Amanda and Scott say the next two months were two of the most difficult of their lives. Amber became terribly sick with the chemotherapy. She could not eat or drink. Her eye began to bulge from the treatments. She was lethargic and in extreme discomfort. At the beginning of Amber’s treatment, one of the doctors had mentioned that only the first round or two of systemic chemotherapy would shrink or kill the tumors and that after that it would simply keep them stable. Knowing that and seeing how Amber was affected, Scott and Amanda began to search for other options.
They learned of a new form of chemotherapy that was being administered at Memorial Sloan-Kettering Cancer Center in New York. It was called Intra-Arterial chemotherapy where a catheter is threaded through an artery from the groin to the eye. This enables smaller doses of chemotherapy to be administered to the exact spot that it is needed. Scott and Amanda took Amber to New York and met with Dr. Abramson and Dr. Gobin. They say that from the very first visit the staff at Sloan-Kettering took their time with them, made them feel comfortable and encouraged them that this form of chemotherapy would be a fit for Amber. In October, just two months after initial diagnosis, Amber began this new form of chemotherapy.
The family needed to travel to New York every three weeks for her chemotherapy (a 10 hour trip by car). This travel was very difficult both financially and logistically, but Scott says they received much help from organizations like the Ronald McDonald House and Children’s Flight of Hope to make sure her treatments were possible. The family is very grateful for the assistance others gave to them during this time of need.
After a few rounds it became clear that the Intra-Arterial chemotherapy was successful in Amber’s left eye. Over time all of her tumors became inactive. However by the time the treatment was started, the cancer in Amber’s right eye was far too advanced. The risk of the cancer spreading outside of the eye was too great. Shortly after starting treatment, the decision was made to enucleate this eye. Amber’s parents say that almost immediately after enucleation, they saw a complete change in their daughter. Her energy came back and she began to thrive.
Although there have been a few “bumps” in the road with re-growth, overall Amber has done remarkably well. She has had no new growth for just over four years! At her last check-up, the family was told she will only need to be seen every 9 months going forward.
Amber is now a very active 8 year old in second grade. The loss of vision in her right eye has not seemed to slow her down as she has never known life in any other way. She loves to read and to do arts and crafts and to play with her older sister, Ashley. Recently, Amber complained of blurry vision after a day of straining her eye at school. Dr. Vito thoroughly checked her eye and diagnosed her with an astigmatism. She was prescribed glasses which seem to help her not only with her vision but also to keep her from straining the eye.
Scott and Amanda say Amber’s experience has made her a very sympathetic young girl who goes out of her way to help others in need. This desire to help others has been fostered in her parents as well. Amanda says that she is very grateful that she listened to the inner voice telling her that the Glow she was noticing was something more. However, it was not until after diagnosis that they realized this Glow was also present in many of Amber’s flash photos.
Both Scott and Amanda are frustrated that they were not aware of “the Glow” and therefore not able to recognize this clear sign in her photos to get her care earlier. They are determined to spread awareness of the Glow to as many as possible. Scott and Amanda created a Facebook page called Amber’s Aspirations where they not only give updates on Amber and her progress but also inform others about the Glow and of Retinoblastoma. Over the years Scott and Amanda have helped many other children discover their own diagnosis and get the care they need in a more timely manner.
We at KTG think the work Scott, Amanda and Amber do to spread awareness of the Glow and to help other families in need make them true superheroes, and we are honored to share their story!