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Update posted by Leslie Wille On Dec 24

Yesterday, we took Milo to Oishei for another MRI. We won't have results from that until after the holidays. Hopefully, we won't see any big changes or growth there. He was very brave and made some big boy decisions regarding how he would like the administration of the anesthesia to go.

While we were there, I received a call from the doctor we'd been in contact with at St. Jude's. After we got home, I returned his call. He informed me that they had confirmed the diagnosis of a Papillary craniopharyngioma, the type that is almost exclusive to adults. He said that every time they've had someone come to them with that diagnosis, they found that it was incorrect, and the child actually had a-type (the type predominant in children)... Except for this time. Unfortunately, this means that St Jude's is no longer an option for Milo. They also were able to confirm the presence of a particular mutation, the BRAF mutation. This particular cell mutation has been shown in clinical trials (currently ongoing) to be responsive to targeted chemotherapy... But again, all of the data on this involves adults. We do not know yet if this is an option for Milo, given his age.

So, we wait some more. In the meantime, we are continuing our research, and reaching out to yet more comprehensive care centers and doctors who may have experience with this tumor. For now, we press pause to enjoy Christmas with our family.

Happy holidays to you all, from our family to yours!


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