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Hello and welcome back to Fallon Moran Radio. It's been a while. It's been a hot minute. The kids are down for a nap. I'm just getting back from a lot of things and I wanted to update you on what's going on because there's been a lot of stuff happening in our world. Really actually since the beginning of this year, but um really ramping up in March. So I want to say that I had a couple of episodes come out in March. I think, yeah, my last episode came out March 10th, and since then things have been kind of off the wall. Um, those episodes in the beginning of March, keep in mind, they were also pre-recorded and pre-scheduled, so I did not record all of March or all of April, and today is Monday, May the 4th, be with you, uh, 2026. And um, so I'm just getting some time, like literally a quick 10 minutes to record because I'm sure those kids are gonna wake up soon because I'm talking. So make the most of it, Fallon. Okay. Um, so we thought that our daughter's complex medical issues were gonna be done when she was diagnosed with leukemia. Turns out we were wrong. As hard and as much as I was like convinced that all of that was behind us, it is in fact not. We have been walking through epilepsy more recently. Um, she was diagnosed with epilepsy early on in March, maybe even the end of February, after she had a routine EEG done. And so we've been trying to get to the bottom of what is causing her seizures, which we just found out maybe two weeks ago that they're not actually seizures, they're called epileptic spasms. So basically, Penelope was fine, she was developing normally up until the age of two. At two, she had all of these random viruses and things happen, and it turns out that it was because she had leukemia. And so on August the 5th, 2024, we got the official she has acute myeloid leukemia diagnosis. Um, it was very fast, it was very like okay, we did blood tests, we did MRIs, we did CAT scans, we did every test that we could possibly do. We know that this is leukemia, we need to move forward with chemo. So um, that was everything that that hospital knew that they could do. Turns out there's other things in the background that should slash could be done. Um, so Penelope got chemo, we talked about it on the podcast, and here we are um two years later, and now she's having these unexplained seizures. Like, what's going on? So we actually have been going down to the children's hospital of Philadelphia because they're the only place that I know of in the United States that has a center for what Penelope is walking through. Um, she is currently going through and being considered for a diagnosis called leuko dystrophy, which means white matter disorder. So there's in her MRI, there's pictures of her brain that are showing. I don't know the best word to use because I also know that all of my words carry so much power. So um I want to use a word to describe what's going on in her brain, but I also want to use a word that will not give this any more power than it already has over us in our situation. So there's just her the white matter in her brain is starving. You probably have no idea what I'm saying because you're not a doctor, you don't understand. Basically, there's cells in your brain that are responsible for memory, and then there's cells in your brain that are responsible for making sure everything's connected. The cells in Penelope's brain that are responsible for everything being connected are starving. It's the best way to describe it. They need nutrition and they're not getting nutrition. We don't understand why. Um, we went to Philadelphia in April and they looked at all of her scans and they said, actually, we see this starting after her first round of chemotherapy. So we had to get Penelope's genetics done so that we can look at all 20,000 plus of her genes to see if she carries a metabolic disorder and um if what she has metabolically cannot process some of the chemotherapies that she was given. Um that's all I know so far. We have no diagnosis, we have no other explanation besides the cells that connect everything are not functioning properly, and basically every time that they try to function, her brain has these like spasms. It's kind of like a Charlie horse, but instead of in your leg, it's in your brain. And so she um she she was on a routine seizure medication, and I took her to the emergency room a couple weeks ago because the seizure meds were doing nothing. Like she was still getting these spasms, and um they were like, Yeah, because it's not a seizure, it's a spasm, and so you need a different medicine. I was like, Well, good thing we came to the ER, so in Philadelphia. So mind you, like every time we go to Philadelphia, it's about a two-hour drive, and we've been to Philadelphia four times in the past two weeks, maybe three weeks. So um it's been quite a quite a last few couple of weeks. And um, yeah, so things have been so crazy, you know. Um we're waiting for an official diagnosis. They said that if anything were to pop up that was concerning, they'd let us know sooner. I haven't heard anything, so no news is good news. Um, but we do need to get a couple more tests done, and this upcoming weekend we will actually be traveling down to Philadelphia to deliver some urine. So, um it's I just wanted to give you guys an update because it's been a wild ride. And um I've been very quiet and because it was a really difficult thing to hear in the beginning, especially because the doctors that are here in New Jersey don't understand this. They don't they're not experts in this, they don't have any knowledge in this. And going to the place that there are the experts in this field, um, they were giving us more reassuring and more confident information that this it's it's probably gonna be something that can be done metabolically. It's probably going to be one of two different scenarios, and um it's it's okay. She's gonna be okay. She's not gonna develop the same way as you know, maybe Piper or other kids, but she will be okay. Um, so you know, um, maybe sometime down the line she could come off the seizure, the spasm medication. That was actually something we had discussed with one of the neurologists there last week. Um, it really depends on how things develop and unfold over time, but it was really scary in the beginning when we got the news from the hospital here in New Jersey because they don't they obviously don't understand it. They're not they're not experts, they um they don't have all of the answers. And by going down to a research hospital in Philadelphia, um, Penelope has been admitted into the clinical trial there. And so her case is now proof of like, okay, this is the need for doing metabolic testing prior to chemotherapy. So don't be surprised if in the next 30 to 50 years, judging by the way that our bureaucratic systems work here in America, that that changes. Um, that you do have metabolic tests done and performed prior to patients receiving chemotherapy. This also reminds me of just very quickly, my grandfather had um colon cancer, stage four colon cancer when I was younger. And he went from being completely normal to being a diabetic. So, like, that's another example of what happens metabolically when you go through chemo. So, um, I just wanted to give you an update. I wanted to let you know what's going on. I wanted to do a podcast because I had the quick, you know, 10 minutes to be able to do it. Um, I would love it if you could support the podcast by sharing this episode and by letting me know that you tuned in. Shoot me a DM on Instagram. I'd love to hear from you. Um, and also I'm probably gonna do another quick podcast to let you know what's been going on in my brain behind the scenes so that you can get a better understanding of like what even in the hell is happening. So um, yeah, maybe I should just delete that a little bit, but more or less I'm gonna do another podcast episode to kind of just like go over everything that I have been undoing like unfolding and going through in the last couple of months, so then that way you can kind of go through and learn that as well. So I'm glad that you're here. I'm glad that you tuned in. Thank you for any and all support that you provide. Again, I would love to see your messages come through. I I literally I want to have conversations other than with doctors. And um, yeah, I'll talk to you soon. Okay, thanks, love you bye.