Hello everyone, I know that it has been awhile. Alot has happened since the last time I had a chance to post. In August Devon started to decline in his progress. He no longer can do anything himself. He communicates with his eyes, we use a letter chart to figure out what he wants. He looks up when we get to the right letter, it is a long process. In the end of August we decided that the trial that Devon was participating in was no longer working. I was already looking into other options. I was going to enroll him in a trial in Texas to reirradiate him, and they offered to do the same protocol at Sloan Kettering. We ended up going to Sloan Kettering instead. They also combined the reirradiation with Avastin. We just completed the reirradiation about 2 1/2 weeks ago. We are going to continue the Avastin once every three weeks until something better comes along. Although Devon may not be able to do much he is still very determined to get better. He is willing to try anything at this point. His tutor for school started with him right after radiation was complete. He has a physical therapist coming to the house for now. I have been researching in the hopes of finding something new. Devon goes for his follow-up MRI on November 9th. It will be 18 months since he was diagnosed on that day as well. Thank to all for the love and support. BELIEVE!!
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