Leptomeningeal disease is a Roller Coaster of physical and mental challenges!

Added: 2026-05-12

[00:00:00]Hey Frenchie, how's it going today?

[00:00:03]Hey guys, how are you? Welcome back to the Tiny and Frenchie channel.

[00:00:09]Thanks. Thanks for joining us again today. We overdue for an update. It's been what? 2 weeks now?

[00:00:14]Um Granted, we went through a freaking roller coaster of ups and downs.

[00:00:21]Uh every day, you know, when I feel like I am doing better, things are going to tank. So, overall, it's been a It's been 2 weeks.

[00:00:31]We have a new setup. Deedee is going to show you what we up to. And then uh I'll let you know how I'm doing.

[00:00:38]Okay, so this is Frenchie's new space.

[00:00:41]Um we used to call it the mud room for the puppy dogs. So, anyways, we've transitioned it to Frenchie's room. Um we've got, as you see, the hospital bed.

[00:00:54]We have a new positioning device called a trapeze. Uh Frenchie can hold on to it and pull himself up, um move his shoulders, um lift his hips a little bit with a little bit of, you know, exertion, he can get that to happen. Um but yeah, no, the bed works really well. Um underneath Frenchie, we need now have a very nice uh air air mattress, I guess. Yeah, kind of like an air mattress.

[00:01:25]Uh the air flows into it, but it moves around and the goal there is to prevent any pressure sores, which uh unfortunately, we've got one brewing. Uh Frenchie has probably a quarter size um purple spot on his tail end that is um well, we're just going to watch it and see what happens. But right now, we've got a pressure pad on it. We've got the um some moisturizer on it. We've got this uh bed pad to help us out and uh we have a nurse coming in. Yeah, I'm a nurse, but we have a wound nurse coming in on Monday to take a look at it and help us out with maybe changing the Foley catheter because I'm Frenchie's wife, not his nurse. Haha, not really. I'm his nurse, too.

[00:02:14]So.

[00:02:15]Frenchie?

[00:02:16]What else?

[00:02:17]Well, uh we have, you know, tre- treatment is still going on. Um so yeah, the past 2 weeks my blood cell count went from a seven nine to a seven to almost a zero. I was at 0.26, which is quite alarming. We had to do a a couple of uh booster shots and uh what did we call it? That platelet platelet platelet transfusion? Uh he had some a platelet transfusion. So. So yeah, we were kind of rock bottom, I feel.

[00:02:49]Um levels are going up again. Uh I'm back on treatment. I started I did something on Friday, more on Monday.

[00:02:57]Next week, unfortunately, it's treatment every single day um with, you know, chemo.

[00:03:05]Um so it's going to be a rough week again. But we're fighting. We're fighting and uh we're in good spirit.

[00:03:11]Yeah. [snorts] Because his blood levels tanked so much after the last systemic treatment, uh they decreased the amount of topotecan that he's going to get by a quarter percent. So, um our goal is to hit that his blood levels not drop quite so drastically and we ended up skipping a week of the intrathecal because of the blood work.

[00:03:32]So, if we can get a better balance with his blood work in addition to the chemo, we won't have to skip any treatments.

[00:03:39]So. And I apologize for the the voice, the a little horsey. I had what it we called uh >> He hacked it away a little. What was the the >> Thrush. He had thrush going on. So yeah.

[00:03:49]So, but it's getting a little better.

[00:03:51]Like I said, um we I think I'm turning up a bit. The the last blood work and everything is showing that I'm finally, I think, hopefully turned the corner.

[00:04:02]Uh the goal is to stabilize the, you know, the bottom part of my body that is not functioning and hoping that nothing is moving up towards the the brain area.

[00:04:12]Um I'm getting tested. Or even, you know, the spots that he does have that they just don't um grow and, you know, progress. So, that and actually, we've been on the topotecan a month now and we've had no real worsening of his symptoms. So, I think we're looking We're feeling positive. We're feeling very positive about that. Um we even had our doctor say something positive, which is unusual for him. So, we we are pretty happy taking it as a win.

[00:04:44]Yes, and yet again, thank you for all the messages, the support, the donation on the GoFundMe. You guys have, you know, super helpful. We've been able to, you know, to purchase some really good stuff to uh help me on my day-to-day, you know, basis functioning. And uh it gave me a smile every time I read one of your comments. So, keep logging, keep sharing your stories, keep sharing stories of families, of friends, of whatever it is.

[00:05:10]Uh you give me a smile throughout the day. It's not easy to be uh on bed rest when you're used to be active like I was. Um granted, I have some beautiful views from, you know, my bedroom right now. I'm looking at that beautiful mountain.

[00:05:23]But, you know, uh sitting sitting or laying down all day is no fun. So, keep um keep cheering. Uh we love you.

[00:05:31]Uh what else is going to happen, Denise?

[00:05:33]I don't know. I think moving forward, we might be sharing some of our meals because we have been eating well. Haha.

[00:05:41]That's one thing we haven't compromised.

[00:05:44]You know, when sometime I can't sleep at night, I wake up and I go on Amazon at 3:00 in the morning. And here I am.

[00:05:50]Tick, tick, tick, tick, tick. Buy, buy, buy, buy, buy. And then we end up with a bunch of boxes coming.

[00:05:56]But anyway, what is going to happen going forward is we're going to be a lot more active on this YouTube channel.

[00:06:01]We're going to share more about day-to-day, you know, uh day-to-day journey instead of having gaps. Yes, it doesn't have to be a super high high and a super low low for us to share. We are going to just We're just going to share.

[00:06:14]And there you have it. And uh And that's about it for today, I believe, unless you have any question, any comments, anything, just, you know, plug it in. I'll I'll be responding to every single message that you guys are going to post on our YouTube channel.

[00:06:30]And and spread spread the word, you know, we want this to be a community.

[00:06:34]It's not just about my journey or Tiny and I's journey. It's about everybody else's journey struggling with LMD or that stupid disease that, you know, gives you all these uh terrible ups and downs. So, >> [snorts] >> yeah, uh say bye.

[00:06:50]>> There you have it. Love you all.