My 6 month-old nephew was just diagnosed with AT/RT, and given it's rarity, we are having trouble finding much information regarding it. I was wondering if anyone out there may be dealing with or has dealt with this type of cancer or knows where we might find more information regarding it. What we have gleaned so far is not very promising or optimistic. He is still recovering from the last surgery, and they are already calling for another. With its aggressive, fast-growing attributes, surgery will be followed with agressive chemo. He is too young for radiation. His tumor was located initially within the spinal column from C3 to C6 and has affected his gross motor abilities. The tumor has spread along the blood flow to the brain, along the nerves and into the muscle and deep tissue. All of this began within the last couple of weeks. We would very much like to connect with others having experience with or knowledge of AT/RT. The information we have found so far indicates that we are probably dealing with months. Confirmation of or disputing of these indications, some idea what to expect, etc. would be appreciated.
MB
