Mylin’s Angry Pancreas

05/19/2026

So as you know, we received the news that it wasn’t yes, but it also wasn’t a no for the TPIAT surgery just a few days ago. During that call, they had said they wanted to do two more procedures on Mylin. One of which we had just done in October 2025 at the Los Angeles Children’s Hospital. I was hesitant to do this one again because Mylin has to be put under for it. Last time they had told me it would be about 2 to 3 hours and it ended up being over 6 hours of them being under. Nationwide were supposed to request the records from LA Children’s Hospital the week we were in Ohio at the end of April, but last week we found out that hadn’t been done. They requested it at the end of last week, but we hadn’t heard anything back. I called L.A. yesterday to see if we could speed up the process, and I got them to expedite the images to Nationwide Children’s Hospital in Ohio both via email and snail mail. Otherwise it was going to be 15 business days.

I’ve said it before, but I’m trying to put it out into the world and manifest that Mylin is able to get this surgery done early summer. That way if it turns out we are able to get it they have the summer to heal enough to be able to return to school as quickly as possible . Mylin is a very self motivated student, and also very hard on themselves. So missing school is something that is hard on them as well.

I had talked to Nationwide on Monday morning about scheduling the procedure that we have already had done. They reached out to me and I thought at this point if it means moving along, as well as getting more information, and insurance will cover it. Why the heck not. This procedure is an endoscopy with internal ultrasound and exocrine function test (the last one showed that Mylin had absolutely no exocrine  function left). I asked the scheduler if we could then go ahead and schedule the second procedure we were waiting on, to ensure we got everything done while we were there. (This flying back and forth isn’t sustainable financially, so we need to be knocking everything out in one visit.) He let me know that he saw the request for it in the system, but he wouldn’t be able to schedule it. He said he would have that team reach out to me. As afternoon rolled around and I knew it was getting to be closing time in Ohio with the 3 hour time difference, I reached out and had the poor scheduling girl very confused. She said in her eight years of working there she had never heard of the TPIAT. She also couldn’t see any of the notes from that side of things, so she had to put me on hold for a half hour to get it all figured out. I would need to schedule with the TPIAT teams’ specific nurses/schedulers (I didn’t know that wasn’t who I called!), and she would ensure that she reached out and let them know that I had booked the other procedure.

The second procedure, we were waiting to schedule is a MRCP with T1 and T2 mapping. She said that procedure would need to be done before the specialized MRCP we already had scheduled. Preferably within 1-2 days before. Anxious to book our flight, as it is, at this point less than two weeks away, I was hoping they would call yesterday. They called this afternoon to schedule, and also said the doctors now wanted us to meet with another team as well. They wanted us to meet with the motility team, so they asked us to wait to book our flight until we are able to book that appointment as well.

Luckily, they called us back about two hours ago and scheduled us for Monday, June 1. Each procedure will be done on consecutive days, so Mylin will have procedures on June 1, June 2, and June 3. We are really hoping this will give them a better picture of everything that’s happening internally and exactly what’s happening with the pancreas, as well as clues of past issues. Like I’ve said before the big thing they’re looking for is something that will point them in the direction that this is for sure just a pancreatic issue and not something causing issues with the pancreas, and also that the pain is coming from the pancreas. All the symptoms lead and the atrophy leads to that. However, as I’ve said over and over again, the bloodwork and the other lab work has never ever mimicked what was going on inside the body. Which is unfortunate because that’s something they really like to have as proof of what is going on. 

So in 12 days, Mylin and I are off to Ohio!

(Pic of the Nationwide Children’s Hospital below)