You might want to consider contacting Johns Hopkins in Baltimore, MD. Dr. Geschwind at Johns Hopkins conducts chemo-embolization procedures (TACE) that were successful in reducing my son’s tumor. I assume you may be in the Maryland area? Unfortunately, my son succombed to CC in October 2009. However, we explored every option and I know that you will want to as well. There is nothing worse than having a child sick with this disease. Your “name” hit a spot with me. I too was a “frantic mom”. If you ever need to chat, my email is “nur1954@gmail.com”
Please keep us posted.