"Our son Adrian was diagnosed with bilateral retinoblastoma when he was just 7 weeks old. He had a very large tumor in his left eye and a smaller one in his right eye that was very close to the optic nerve. Adrian went through six rounds of systemic chemotherapy with a very good response in both eyes. His last round of chemotherapy was on October 31st last year.
While he was in treatment, we also got the devastating news that his cancer was caused by an extremely rare deletion on his 13th chromosome which we are told happened randomly (neither of us carries the deletion). The deletion included a gene that suppresses tumor development, meaning that Adrian is at a higher risk for more retinoblastoma tumors and secondary cancers throughout his lifetime. Adrian also has other challenges from the chromosome deletion including motor and speech delay and possible learning difficulties. Despite all of this, Adrian is a happy, smiley, and thriving little boy!
He is now 17 months old and getting stronger every day. He works so hard and has done so well in all of his therapies, and is standing with assistance and even beginning to cruise while holding onto the couch. He said his first word, “mama,” at a year old, and while he is behind in speech, we find that every day he is understanding more and more of what we say.
We almost made it to one year cancer-free, but unfortunately, a new tumor was found during a recent eye exam under anesthesia. Thankfully the tumor is still small, and we've begun the first of possibly several laser treatments. We will know in a month whether the laser treatment is working."