We started with the treatment plan that Dr.’s recommend fighting this disease and we weren't sure about trials as we didn’t want her to experience other symptoms due to the medication. After being on the fence, we started a vaccine for DIPG @ Ann Robert in Chicago. Which they have been really good to us. And they aren’t done concerning my daughter.  After the trial in Jan she started to progress as they gave her 6mths to live when she was diagnosed. we started reradiation after her progression, and Avastin after the 2nd round of radiation. We stopped Avastin and started ONC201 & after the 4th dose well, the week before she started to show symptoms like drooling and she hasn’t been able to move since Jan, but it seems she is having a harder time. Left eye is weaker so is her right side. From what I can see, it like it’s up and down, I am a realist. I have faith in Amayah. It is Gods will either way. I’m optimistic about the plan but because the MRI was the same as the last one it’s a waiting game for the next. The last MRI showed no progression or enhancement. Referring to what I stated above I took her through the ER for the latest scan and it showed as the last one with minor changes. So we started dex and her symptoms seems like they are getting better. We also started the Avastin back up. We are just trying to make it. 

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