We received the results of one of the pathology tests today and did not get the news we were hoping for. Jordan’s tumor has MYCN amplification which means she has the most aggressive form of neuroblastoma, classified as high-risk disease. In addition to surgery and chemotherapy, Jordan will likely need a stem cell transplant as well as other experimental therapies. Our current cancer center cannot provide all the necessary treatments for high-risk disease so we will need to set up additional care for Jordan at one of the main neuroblastoma centers in the country, either Memorial Sloan-Kettering in NYC or CHOP in Philadelphia. Memorial Sloan-Kettering specializes in an immunotherapy while CHOP offers a high-dose radiation therapy.
Ideally, we would like to meet with both Sloan-Kettering and CHOP prior to selecting the treatment protocol, but the holiday and a national oncology conference are interferring with our timing. Our plan now is to meet with Sloan-Kettering on Friday, make a decision about which treatment to pursue, and begin chemotherapy on Saturday. It seems like everything is moving very quickly, but it is imperative that we begin treatment as soon as Jordan’s body is recovered from the surgery. We are very disappointed that Jordan has high-risk disease, but are trying to focus on the fact that her cancer can still be cured...it just means she will have a longer road. Please keep praying for our sweet baby girl and also for Craig and I as we have to make some important decisions in the next few days.