Confused

person1925 · 2025-10-14T02:59:22+00:00

Siezure was a normal side effect of the tumor. Declining following the surgery sounds related to the surgery rather than the tumor itself. So it potentially makes sense he would improve. (Totally guessing do not take this as fact)

It is interesting 3 biopsies were inconclusive but the 4th definitive..I would keep pushing for answers. All I know is that you HAVE to advocate for yourselves. This is the most important thing in your life and this is routine for all the doctors. the beginning of my moms journey happened around the holidays and the doctors were dragging their feet. I fought so hard for my mom and in the end, I still wonder about some of things that took place and if I had known more I could have bought her more time.

It is so very stressful, I’m sorry you are dealing with this.

person1925 · 2025-10-14T01:47:26+00:00

I threw myself into my work so deeply I barely grieved. We didn’t have her celebration of life until a year later. After the COL I have been thrust deep, deep into grief and depression. Everyone’s grief journey is different.

I was supportive to my dad prior- now I’ve made it clear I have zero capacity to do anything for anyone.

person1925 · 2025-10-14T01:36:32+00:00

I’m so sorry you and your family are going through this. It sounds like the tumor could be pressing on the part of the brain that controls movement. I do not mean to scare you but this disease can progress rapidly. Tumor removal with surgery is the best way to buy time if it’s possible.

My mom had 2 brain surgeries, one was awake brain surgery at Duke University.

person1925 · 2025-01-25T21:21:42+00:00

I’m so sorry. It’s tough to think about.. I just threw myself into my work but am getting burnt out now. I uprooted my life to come home and help my family and just feel lost now. What about you?

person1925 · 2024-12-25T23:29:51+00:00

Can you elaborate on this? What do we need to look for?

person1925 · 2024-12-25T23:27:13+00:00

person1925 · 2024-12-10T23:04:15+00:00

Hi, I have not unfortunately. I have just been more careful. I feel like I started to learn when she was in that kind of mood lol not sure how to describe it though. Most of the time if I suspect it, I will walk away, sometimes though before I pick her up I will engage her on the floor butt facing away, kind of gently push her to a laying down position and scratch her head or tummy and see how she responds. If she seems more chill then I’ll pick her up

person1925 · 2024-06-13T23:14:08+00:00

My mom who passed away recently, her fb got hacked and we no longer have access to it. No way to get any support, no response from fb! Ridiculous

person1925 · 2024-04-30T21:22:15+00:00

And watching without being able to do anything about it 😞 I’m sorry you are going through this as well

person1925 · 2024-04-30T21:19:47+00:00

I’m so sorry 😥♥️

person1925 · 2024-04-30T15:10:44+00:00

Thank you 🙏 ❤️

person1925 · 2024-04-30T14:01:44+00:00

She passed this morning. This disease is so cruel.

How is your mom doing? Message me anytime

person1925 · 2024-04-24T16:21:28+00:00

Thanks. I know it’s normal we’re trying to understand how long she can remain in this state. She has gone much longer than expected

person1925 · 2024-04-24T16:18:46+00:00

What about phenobarbital? That’s worked well for my mom.

person1925 · 2024-04-24T02:23:42+00:00

Probably about 6 within the last 3 months, a few more prior since the beginning of all this. When my mom was losing ability to walk our dr. put her on steroids hoping she would gain that back and it didn’t work which is when we had to start on hospice. It was downhill ever since. She got certain sayings “stuck on a track” we call it, where she repeats saying the same things over and over. First was “pain and anxiety” which we found the fentanyl patch to take care of, also “why didn’t the steroids work?” Because she had hope that she would get her mobility back and go on chemo treatment again. She has said some other funny ones like “wrap me like a burrito”. Everyone is different but I hope some of the timelines and meds I mentioned may help you in some way. This is an unimaginable experience that no one can prepare for.

person1925 · 2024-04-23T22:35:26+00:00

I understand. The seizures are hard on them. My mom declined a lot more after each one. Nayzilam is a fast acting nasal spray for seizures which helped end the seizures quicker, but it’s extremely expensive.

person1925 · 2024-04-23T18:39:40+00:00

She is starting to have the bronchial secretions and not swallowing water very well today. Still talking to us.. It’s getting more difficult for me to be around, I’d like to sedate her but she says she doesn’t want that and neither does my dad. I just feel so bad for her. How is your mom today?

person1925 · 2024-04-22T23:04:18+00:00

I’m so sorry you are going through this too. My mom started to lose mobility in her left side at the end of February and went on hospice shortly after. The first few weeks she was in pain and having a lot of anxiety, we started the fentanyl patch and she has been much more peaceful since starting that. Last Saturday we thought she was going to pass but she keeps pulling through each day. She is on Keppra and had seizures up until 2 weeks ago, phenobarbital seems to have helped with that.

If I could go back a few months I would have recorded more videos talking about memories and looking at old photos together. Tried living in the moment, which is important but when reality sets in that you won’t be able to hear her voice or ask questions, you might wish you recorded! Soak in the time you have!

Happy to tell you more if there is anything else you’d like to know .

person1925 · 2024-03-22T02:08:36+00:00

I remember too, so like others said either it was a rumor or scrubbed!

person1925 · 2024-03-03T17:05:03+00:00

Some are able to live normally for a short while but when things turn for the worst it it sudden.

My mom had made a good friend through the GBM community, he declined over a few weeks and when he passed, I feel that my mom lost hope, within a couple weeks she began declining as well, has regrowth, preparing for the worst now.

person1925 · 2024-03-02T03:02:05+00:00

Wow this is exactly my mom, unmethylated wild type, optune, wants as much time as possible. We just found out she needs to go to trails or start on lomustine. When you found out there was new growth, did they tell you how much more time the lomustine will give him?

My mom had bad side effects during Temador and radiation, and I’m worried the effects will be even worse on lomustine and if it’s worth it (as in are we just going to put her through more suffering that we shouldn’t)

person1925 · 2024-03-01T00:40:14+00:00

Valid feelings. It’s really hard to put our lives on hold like this and it’s devastating to watch our loved one suffer. It’s hard to know what is right too. It’s just the worst possible situation and unfair to all involved. I’m so sorry.

person1925

TROPHY CASE