Mylin’s Angry Pancreas

05/17/2026

If you look closely, you can see the dried tears rolling down their little cheeks. It’s been multiple days in a row of immense pain. The pain is always there. It’s a constant, but it flares. Nothing we do can stop it. It’s been said that pancreatitis is one of the most painful diseases a person can have. Throughout it all, My doesn’t overly complain and I could count on my hands the amount of times they have cried. They are one hell of a tough kid. Tonight as I walked by their room I heard a soft, barely audible “Mama…”. I went into My’s room right away. They haven’t been good the last few days the tears have their cheeks flushed in this photo, otherwise they haven’t had color to their skin at all and they have had really dark circles under their eyes. As I walked in their room, they said “It’s getting worse…” Tears welled up in their eyes. My heart sank, now part of a heavy pit in my stomach as they began to cry. “It’s been getting worse every day. Every day. I just, I just don’t know how much longer I keep going like this.” I am instantly nauseous.

For many of you this is all new, but we’ve been in the depths of it for a long time. We almost lost My a few years back. They spent months hospitalized and we split our family up for almost half a year going back and forth. One parent with My and one with the twins. When My was finally healthy enough to be released (the little stubborn put your mind to something and do it) they went directly to Germany for 3 weeks as a foreign exchange student. They were home for only about a month when all of this began with the pancreas.

We have stayed mostly positive through it all. We have had our fair share of therapy, and at times have all just wanted to hide away from the world in our little bubble. To hear those words, it wrecks you. It puts your mind on another track and makes you sicker than you could imagine.

I rushed with Daniel’s help to get My their nausea medicine, pain medicine, a heat pack for their back and one for their stomach and insisted they sit out with us for a distraction (because the reality if all of that does little to comfort the amount of pain they have now). Tonight I am thankful that this is the pain that takes all their energy and makes them rest, because with the pain that doesn’t allow them to sleep at all… that’s just too much for a night like tonight.

We hope to hear from Ohio tomorrow, though they didn’t get a date. They need to confirm with L.A. that the procedure we did there is what we need. That would mean there’s only one left to fly to Ohio and do. I have been asked, could we do those procedures here and not fly to Ohio? Of course, we could, but if you think your health care system is bad where you are, ours is likely worse with wait times. Ohio even told us when they deal with SoCal it’s months of waiting for appointments and horrible games of telephone, where after you get the procedure it may not have been the specific one they needed and they would need to redo it anyways. Some of these procedures are ones Mylin has to go under for, so we don’t need to be doing them more than necessary. All of this is what needs to happen before we could possibly move forward with the TPIAT surgery. I did ask if we get approved, if there was still openings for a summer surgery and they did tell me yes.

So for all our friends and family praying, sending thoughts and vibes and all the well wishes, if you would put it out there that My would have reduced pain and an expedited path to the surgery with a quick recovery if that’s what will take this pain…. I’d be thankful