Mylin’s Angry Pancreas

06/05/2026

Today was long as hell. We had to get up early because we had to check in at 7:45 AM for our first appointment.

The first appointment was with the pain psychologist. It went really well and we were glad that we were able to get another visit on the books with her while we were here. Mylin was even able to share about their sisters being worried and that psychologist agreed to being able to talk to sisters to help them with any feelings they were having. She said if we do go through with the surgery, she’d like to have us out here the week before so that Mylin could get through a couple more appointments leading up to. Overall, she’s really happy with where Mylin is at with everything, and it has been such a help.

Our next appointment was supposed to be only a few hours later, but our TPIAT surgeon was rushed into emergency surgery,  so we had to put that off until later in the day. He did tell the schedulers to ensure that we were on his books, though, because he had had us stay behind to meet with him.

That all worked out though, because it turned out that there was cow therapy today at the Ronald McDonald house and that was exactly what Mylin needed. Whenever Mylin has an endoscopy, it upsets all of their internal issues whether it be the pancreas, the nausea, the stomach , the exhaustion… It hits them in every way possible. A little cow snuggle was exactly what they needed for a pick me up.

Just after lunchtime, we met with our G.I. doctor. That visit was a bit more of a somber one. He explained that imaging had shown that not only was the pancreas quite a bit worse than they had expected, but Mylin is, of course, a very complex case. The pancreas is not only far worse than they thought, but it had disturbed some of the tissue and organs around it. This means that Mylin’s recovery will be much harder than an average TPIAT surgery, which, if you’ve done any research is by no means easy in the first place. It also means we’ll spend more time in Ohio, and that Mylin will spend likely weeks more time in the hospital than a traditional TPIAT surgery recipient. He also said that Mylin‘s blood sugars are going to be a bit more of a problem than other people’s given. What’s going on inside. He said that due to Mylin‘s extreme case we would want to really consider doing more pre-hab before going through with the surgery. He said that while he could not give us a yes, that he believed everyone was leaning towards a yes. He walked us through a lot of of the hardships and cons of the surgery. He apologized for the negativity, but said he felt it was his job to give us all the information. I appreciate that because I like to walk into things while very hopeful, also with a realistic view. He told us that he likes to come in with a very clear path of where he would see patients go, but because Mylin‘s case is so complex, he was completely split down the middle. He shared with us the pros of moving forward, a little more quickly , followed by the pros of spending a little bit more time with some of the rehab solutions, which could possibly helped Mylin to have a quick quicker and easier recovery. However, by no means does that mean an easy or quick recovery, nor does it guarantee that it would be easier or quicker. Because of this, he really asked us to spend some end of time talking about things and not rushing into anything.

After this, we ran back to the house and got a little bit more cow loving time before we met up with Dr. Nathan our TPIAT surgeon. This time I was actually able to put Daniel on speakerphone so that he could chime in with any questions or clarifications he may have/need. Dr. Nathan started out with asking us what we had gathered or what information we were given from our last appointments. He’s always really impressed by the information that we obtain and have also sought out ourselves. He did say if we were thinking, we wanted to have an early summer surgery to let him know as soon as possible. He reiterated what an important decision this is, and to take our time too. He talked about how tiny the pancreas is after being shrunken, and walked us through what that could possibly look like with the fact that on the visuals, they also found that Mylin has a very rare artery placement. This artery placement only happens in about 10 to 18% of patients and the issue is that it’s the main artery to the liver and within these patients, it usually goes directly through the pancreatic head or is directly attached to the back. This can make surgery much longer, depending on how adhered that artery is because it’s absolutely important that it be saved. Like I said this kid just loves being a rare case! Daniel and I asked him to clarify what the G.I. doctor had been explaining about the possibility of an extended 4 to 6 weeks of additional rehab before scheduling the surgery. To him it made sense just to do the stomach Botox during the surgery. That way we’re not putting Mylin through any additional procedures, especially since that procedures tend to make everything worse for a decent amount of time. He said the medications that were suggested by the motility team could be started at any time and as soon as possible. As he began to explain some of those other things they would like us to do as prehab, I realized they were the exact same suggestions they had given us last time we were here, a month ago. So I was excited to tell him that we had already not only taken all of those things into consideration, but we had implemented them as soon as we got home. Those were taking the weight gain shakes to which I was able to tell him that Mylin had gained 4 pounds since our last visit just four weeks ago. They also wanted Mylin to begin to do small workouts, so I was able to share with him that Mylin’s been doing 15 to 30 minute workouts in little garage gym and/or going on walks with us, and still being able to put that weight on. I also informed him that we had began with a California therapist, and also connected the California therapist to the pain, psychologist here and they were beginning to collaborate on Mylin‘s journey. His face lit up! He had the biggest smile. And did like a little headshake and said he had to be really blunt with us and that no one ever does that as soon as they leave the first time. So that sets us up for being ready for a quicker surgery!

So we just reached out to our coordinator a little bit ago, and told her we would like to give them the greenlight to start scheduling us!

This is an absolute crazy feeling. It’s obviously so exciting to get a yes, and I think Mylin feels super validated and the fact that they see how horrible the pancreas is. It’s also hard because although we have an idea of what’s ahead, I know we can’t even imagine it until we’re living it. Then to get the news that even within this, Mylin is such a unique case. In a way that’s gonna make it more difficult is hard.

So trying to sort through this mixed bag of feelings, and also feeling so thankful for the option of an operation that could be life-changing, a team that wants to work with us even as we figure out how to move forward with the extra hardships that comes with Mylin’s extreme case, and also just so blown away by the fact that poor Mylin had been brushed off for so long before I found out about this place.