Mile #116 Ava
My daughter, Ava, was diagnosed with unilateral non hereditary Retinoblastoma shortly after celebrating her 1st birthday in 2017. Retinoblastoma is extremely rare and only effects 1 in 20,000. Less than 200 children are diagnosed with Retinoblastoma per year. Two days after finding out the devastating news we were at The University of Virginia and she was being put under anesthesia to examine her eye better. After the exam we learned that the tumor was Grade C and her doctors were confident that they could save her vision and her eye with systemic chemotherapy. An MRI was done to be sure the cancer had not spread beyond her eye and a PICC line was placed in her left arm and she started her first round of high dose systemic chemotherapy later that evening. One month later the PICC line was removed and a port was placed in the left side of her chest. Ava had 6 rounds total with moderate reactions to the drugs she was given. She completed her 6th and final round of chemotherapy in September 2017. Since then she has had eye exams under anesthesia every 4-6 weeks with laser and cryo therapy (burning and freezing the tumor) As of May 8, 2017 the tumor has continued to grow. We were given three options; to do two more rounds of systemic chemotherapy, go to Philadelphia to see the leading experts on Retinoblastoma or remove the eye. Going to Philadelphia was our last option before removing Ava’s eye. IAC has done great things for kids with Retinoblastoma so we were very hopeful that it would work for Ava. We went to Philadelphia and Ava received 3 rounds of IAC and the tumor is now stable. She still often has scans and we will be returning to Philadelphia on February 5, 2019. Ava’s only mistake is being born during a time where the cures aren’t present, the treatments are scarce, and more funding is needed.