We went to see Dr. Fitzpatrick on Thursday as scheduled and the appointment went great. She was so excited about the MRI. She said that the tumor was originally about the size of a golf ball and had a litlle "finger" up in to Jon Jon's left brain hemisphere and after the radiation and chemo it is now about the size of a PEA OR SMALLER!!!! She said that she has NEVER seen such a drastic improvement in a tumor of this type ever!!
Of course, she had to keep us focused and said she doesn't know if this will change the ultimate outcome or prolong Jon Jon's life, but she'd like to think that it will and, of course so do we! She didn't have any idea what actually caused such a drastic response to the treatment so we are going to continue doing the same exact thing that we have been, except for the radiation. He had the lifetime dose already.
So we will do our part by continuing to give him his meds and supplements and we ask that all of you continue to your part by keeping the prayers and thoughts coming for him!! Like Dr. F said, let's enjoy this great news for a while!! We go for his next MRI in 3 months.
Next Wednesday we'll meet with Dr. Awner at Children's. He is a pediatric eye surgeon and is going to be the one to fix Jon Jon's eye. We'll find out if and when he can do it when we are there. 2 hours after that we'll meet with Dr. Duffner and Dr. Rozelle to discuss the MRI a bit further and also some things for follow up and future care options.
Speaking of that, he has been taken off the Decadron and has been put on a milder steroid which is for the physiologic changes that occured while on the Decadron. Hopefully that means some of the facial and abdominal puffiness will reduce. He lost about 6 pounds over the last month since his dose of the Decadron was significantly reduced.
That's about it for now. Enjoy the great word with us and please continue those prayers!!!