Mylin’s Angry Pancreas

05/14/2026

*** I need to amend what I said about the autoimmune pancreatitis. Traditional autoimmune pancreatitis finds masses on the head of the pancreas, and Mylin’s mass was on the tail. (I think I either said them backwards or said Mylin’s mass was in the wrong spot at some point during the video. I’m in a little bit of a funky head space right now)

TPIAT Callback the written version

We got the call back from the Children’s Hospital in Ohio a little bit ago. Basically, at this point, the answer isn’t yes or no. They have some additional tests as well as internal imaging and more specialized imaging they’d like us to have done. The big hangup for Mylin is that Mylin’s bloodwork and test results have never shown what was happening internally. Even when Mylin had the 4 cm mass on the tale of the pancreas, the blood work was not off the charts abnormal. Their lipase numbers also have never told the full story. Mylin did come back with a very rare, genetic mutation, but that genetic mutation is so rare. They don’t have a lot of concrete evidence on it besides the fact that many of the people that have it do you get chronic pancreatitis, but it hasn’t been studied enough to say that’s the concrete answer. Also, they have pointed before to possibly Mylin having autoimmune pancreatitis, but people with autoimmune pancreatitis when they get a mass it’s in the head of the pancreas. Therefore, Mylin having the mass and the tail of their pancreas doesn’t fit well into that category. However, Mylin did have abnormal cells that looked to have either been autoimmune pancreatitis or cancer. Thank God they weren’t cancer. That was a stressful week waiting for those results. It sounds like we will likely fly out to Ohio in the next 1 to 3 weeks to get further testing done. They also have some medication that’s that they want Mylin to start on as well as meeting with a pain therapist. I just didn’t have it in my mind that they were not going to be saying yes so I’m kind of going through it with this. Onto the next step though.