Welcome to Amelia's CaringBridge site. Amelia was diagnosed with opsoclonus-myoclonus syndrome on September 18, 2013. On October 14, 2013, Amelia had a golf-ball size tumor removed from her abdomen which turned out to be cancer (ganglio-neuroblastoma).
It has been exactly one year since Amelia had her ganglioneuroblastoma removed. We were spending our first night wrestling with the tubes and lines trying to comfort a drugged up and very sick little girl. At that time, she had barely started treatment for OMS and still couldn't walk and was having terrible rages. It was still a couple days before we would find out that tumor was indeed cancer, and a few weeks before we found out that the cancer had been fully contained and removed with the tumor. Amelia has come so far since then! She regained her ability to walk last December, and although she still gets wobbly sometimes, overall she is running, walking, and playing like any other 3 year old. She even attends Head Start! She gets two monthly infusions at the hospital, Rituximab and IVIG, and she gets a shot at home every other day. If things continue the way they have been, she'll be done with shots in December! She'll continue with the infusions well into next year for sure. Amelia will have her one year post surgery scan and labs next week, so we'll be praying for the "all clear" once again! This is a one day at a time deal and we are so thankful for our great local doctors and nurses, and all the supportive people we have around us. We couldn't do it without you.