Kathy's latest news about Joey

In the past two months, Joey has participated in a clinical trial of an experimental drug (Cabozantinib) at Children's Healthcare of Atlanta. After the first month, most of his measurable tumors in his lymph nodes shrank slightly. But new mets were found in his liver. After the second month, the MRI showed more mets in liver and other tumors were 10% bigger. Again another drug failed him. Joey was off the trial. We are now again facing a tough decision. Joey continues to experience constant tummy pain, heartburn, reflux and nausea. Oral chemo of Cabozantinib raises his blood pressure. He is easily tired. He is on morphine and nausea, blood pressure and acid pills. But as long as he has some energy, he is enjoying summer. The conversation with the drug companies continues, but there is no progress. We are grateful for the outpouring of community support and hoping the drug companies can give him an opportunity, an opportunity to live like a 10-year-old.