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Mise à jour publié par Leslie Wille Le Dec 24, 2019

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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Mise à jour publié par Leslie Wille Le Dec 21, 2019
Today, I got a phone call from a reporter at WKBW, asking if she could come interview Milo and I! Thanks to a coworker making a last minute switch, I was able to leave work a little early and make it happen. As I walked through the door, Milo bounced toward me and yelled, "Mom! I'm gonna be on TV!"

Just before the interview started, he held my hand under the table and I whispered to him, "will you keep holding my hand? I'm a little nervous." He said, "I'm nervous, too."

He quickly warmed up and was more than happy to talk about the bills, give his superbowl predictions, and share his favorite player, Ed Oliver. He grinned ear to ear as we watched the segment later on. You can watch it yourself here : Video

We are still waiting to hear from the doctors about their recommendations for treatment. The waiting is excruciating. We've reached out to various places (as have they) for second opinions, and have received confirmation of the diagnosis of Papillary craniopharyngioma (very unusual in children!) from St. Jude's in Memphis. On Monday, we will return to Oishei for a post-op MRI. I am a bit anxious about it, but will be relieved to have a better idea of what's going on in there while we wait. Neither Milo nor I are excited about him having to go under general anesthesia again. Thankful for the rallying of support behind us to give us strength during scary times!

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