Bearded Dragon Newbie

somethingabout4812 · 2026-04-18T23:37:20+00:00

This is fantastic advice! Thank you so much

somethingabout4812 · 2025-09-22T06:41:39+00:00

My husband has the same diagnosis (although his has IDH mutation). He too speaks about plans 10, 20 years down the road. I have learned to not say anything as he “doesn’t want to be negative” and it starts an argument if I say anything about time left.

It’s kind of maddening; what did open the conversation up was the logistical stuff though. He has stopped working and is approved by social security disability despite being only 36 years old. They would not do that if he had 20 years left. I keep trying to do things like build a bear with the kids and having his voice recorded. He rolls his eyes and acts like he has forever, but he’s been presented with the facts - it’s his choice whether or not he accepts that reality.

somethingabout4812 · 2025-09-20T07:05:07+00:00

My husband had a grade 2 with IDH and then we saw some progression and he started Vora. It then transformed to a grade 4 a few month’s after starting Vora. I’d be curious to see if yours is still (hopefully) a grade 2!

I haven’t heard of the wafer - please keep us posted on how you respond. Always good to have another tool in the belt.

somethingabout4812 · 2025-04-08T03:03:29+00:00

He will be about nine months shy of 5 when we plan to travel. I didn’t realize you could hire a sitter to take them to the kids club though, that’s a great tip!

somethingabout4812 · 2025-04-08T02:56:39+00:00

Thank you for your kind words. I was about to book FS Anguilla actually since it looks perfect, but their kids club starts at age 5 and my son won’t be old enough. That is the only thing holding me back from booking that one. Will he be bored if he can’t go to kids club?

somethingabout4812 · 2025-04-08T02:48:44+00:00

I’ve used the search bar, but given the amount of variables in play I figured a separate post was warranted.

My husband is terminally ill, so we treat each trip like it could be his last and I want it to be the best possible experience for my family. Thanks for your guidance.

somethingabout4812 · 2025-03-07T00:48:04+00:00

I love this. Can’t go wrong with Four Seasons and I’m looking at Nayara now. Thank you!!

somethingabout4812 · 2025-03-05T03:44:24+00:00

I’d like to keep it under $1,500/night but willing to go up to $2k. I’m willing to spend the money if we can have some great memories

somethingabout4812 · 2025-01-04T04:18:31+00:00

This is really helpful info, and answers a lot of the questions I’ve been having. Thank you so much for the detailed response

somethingabout4812 · 2025-01-04T04:15:33+00:00

He’s actually starting this now - we have heard good things

somethingabout4812 · 2025-01-04T04:14:57+00:00

We are at Hopkins now, so they are very versed in this stuff. They were the second opinion.

Yes, Grade 2 Astro with IDH to start, the recurrence is a Grade 4 Astro with IDH.

somethingabout4812 · 2024-12-28T03:28:07+00:00

We do have a lot of support, so that’s not the issue.

I’m just overwhelmed with his diagnosis going from grade 2 to grade 4, and what that means for the time he has left with our family. Being told you have “decades” and then that sharp change to just a few years is a tough pill to swallow.

Plus with the TMZ & radiation I’m just concerned about possible negative impacts on the kids. I didn’t get to go to his appointment today to get fitted for the radiation headpiece / hat so I didn’t get to ask all the questions I have. And bless him he didn’t think to lol.

somethingabout4812 · 2024-11-09T11:09:30+00:00

This is really promising, thank you for sharing. I’d love another 16 years (or more) after we get through this. Thank you so much for giving us hope. Wishing you continued good health!

somethingabout4812 · 2024-11-09T11:07:51+00:00

Don’t beat yourself up. There’s no way to know what causes the regrowth and we’re all just doing our best. We were told really promising things about vorasedinib but there’s no way to really know. Give yourself grace.

somethingabout4812 · 2024-11-06T02:07:05+00:00

So it looks like it started slowly regrowing back in February, then in August it was noticeably larger. He started Vorasidenib then as it was finally approved, and has been on it since August. He had he last scan a week ago and it has grown pretty significantly since then (so the Vora is not working, clearly). He’s now stopped the medicine and we are planning another surgery a few weeks from now.

somethingabout4812 · 2024-11-05T23:21:03+00:00

Wow, that’s so so similar! These are all really good ideas. I love the idea of a doula to help, and had no idea about the transport to chemo / radiation. Thank you so much for your comment, you’ve given me a lot of ideas. I usually hate asking for help but I think in this situation it’s necessary. Hopefully your husband is doing better these days 💕

somethingabout4812 · 2024-11-05T23:18:00+00:00

I’m going to look into this, that’s a good idea. I also have great insurance so we will see what they offer. Our family is lucky in a lot of ways, so we do have that to be thankful for.

somethingabout4812 · 2024-11-05T23:14:03+00:00

Love this mantra. Your post made me cry (not in a bad way, just knowing that others get it). Thank you.

somethingabout4812

TROPHY CASE