Erik, our son writes this last year - and ToDAY Tyler is cancer free: We have another 4 years and then we can be confident! What a scare for all of us. Here are Erik's words as we found out about Tyler:
We are feeling better about all this today. The biopsy came back as Anaplastic Ependymoma . Front temporal lobe location. I think this thing is so rare that they are trying to figure out a followup plan right now. Surgeon told Wendy today that they got it all out, but this thing has a high recurrence rate and that the next 5 years are critical to stay on top of it. If it comes back, they will just take it out again. It doesn't seem to spread into other tissues and stays localized. It is a cancerous tumor,but Tyler is tumor and cancer free right now.The survival rates looked good from the NCI reports I read . I think the oncologist will try to do a conforming radiotherapy.This is were they pinpoint the radiation to just outside the tumor site. I think the oncologist is scrambling to find enough previous cases of this to get some kind of consensus on what plan to take. Our surgeon said that they might just take a wait and see approach since everything has been removed. Adults with this type of tumor just have it removed and are fine.Ty is doing awesome and Dr. Kastle told us that he has nothing in his body right now and we need to relax and know he's out of danger now, and now we have time to figure it all out. I guess I just need to keep my faith in God and continued neurological skill and brain tumor treatment advances. Pediatrician called me today and I gave him a big high five on calling this one. He told me he was a little freaked out as well. Thank for your support and prayers guys. I'm getting over the tearful breakdowns I have been hiding from my kids the last week. This really helps you understand what life's true priorities are. Erik
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