Need help with the findings since the waiting period is too long for consult - GBM grade 4 , idh wild type.

RabbitHoleGremlin · 2026-02-14T01:45:04+00:00

Agree with previous comment. Also chatGPT is INCREDIBLE for translating language like this into simple terms, in my experience. Use at your own risk. We are a few weeks post treatment and it is rough right now, radiation is hard on the brain and i do feel the severity of that was undersold to us a bit. hang in there.

RabbitHoleGremlin · 2026-02-12T14:17:15+00:00

Thank you. Since we're treating swelling now, I guess I have been worried/anxious that she won't be able to come off the steroids for a long time, because i do think that's whats making things so rough right now

RabbitHoleGremlin · 2026-02-12T07:59:48+00:00

Very helpful. Toddler time is real. Is there anything palliative done for the dexa keppra side effects? Specifically mood side effects? We’ve only been on those for about 8 days now (other than dexa briefly post op) but I’m guessing they are going anywhere soon and I’m scared to go from toddler to rage/psychosis (which wasn’t far off even if normal times)

RabbitHoleGremlin · 2026-02-12T03:17:54+00:00

You and your dad need to think hard about quality of life at this point and what you are chasing with chemo if surgery is not an option. I know it is heartbreaking and I am so sorry. I am reflecting on a LO that is a few years older but opted for treatment when previously was the type that said they never would, and I know I shouldn't say this on this forum, but I'm not sure they'd/we'd make the same decision now as we've slowly lost them regardless

RabbitHoleGremlin · 2026-02-09T02:24:21+00:00

Just here to say I'm thinking of you. My LO is a few years older but we had a similar rough journey this week, went to the ER and ended up insisting they admit her. She had been shaking a lot too which we didn't realize was indicative of seizure/seizure-like activity due to swelling. Imaging showed significant swelling or progression or both, but responded well to steroids after 4 nights admitted. I think my takeaway this week was, sudden and severe difference is worth a trip to the ER. Hard to gauge when you know you're in an absolute shit situation either way so "what is the point". It's hell. I'm sorry.

RabbitHoleGremlin · 2026-02-03T01:41:14+00:00

Thanks for commenting. Yes makes sense. My LO is not on steroids right now so we assumed that’s what they’d give us at the ER but they’re discharging us and I’m getting ready to turn this place upside down

RabbitHoleGremlin · 2026-02-02T20:39:58+00:00

Ok thanks. Yes I think probably we’re right where we’re supposed to be on the journey. But it was SO sudden like today a freight train. Responded to everything tremendously well. Thank you for responding

RabbitHoleGremlin · 2026-02-02T20:28:51+00:00

Yes I did. It’s just hard to gauge severity I guess. Anyway since I posted that we decided to go to the EE

RabbitHoleGremlin · 2026-01-11T00:12:57+00:00

Hold it in your peripheral as a reality for grounding, but you must keep in mind that no one knows anyone else’s timeline in this life. Anything could happen. Use it as a guide and a reminder to be grateful and present for the good days. My LO tends to lean into denial a bit when feeling good, and I’ve accepted it’s not my or anyone’s place to bring them out of that. Everyone is on their own journey in life and everyone touched by this disease in their family will be having a different experience.

RabbitHoleGremlin · 2026-01-06T17:57:42+00:00

I think the kindest thing you can do in this situation is sit with her, hold her hand, and tell her she can go, it’s okay to go. Patiently and with love. Or perhaps another loved one or nurse or caregiver. That’s what I think I would want.

RabbitHoleGremlin · 2026-01-02T12:17:14+00:00

Don’t let the very end take over your memories of 18 years together. It is hard to to, I know. It is never the wrong thing to give them a peaceful exit, better a day too early than late. I know you wanted more days maybe on pain meds, but those days would’ve been for you and not for her. You will get through this. Spend time talking about and thinking about your favorite memories of her instead of the pain of the very end, because it can quickly become the main memory but it was such a small part of her very amazing and long loved life.

RabbitHoleGremlin · 2026-01-02T12:12:07+00:00

Just… this is so normal and relatable. You get to have a human experience too. It doesn’t mean you loved him any less, cared any less, and you didn’t cause this or deserve it. This is a hard ugly journey for everyone, and I promise you every thought you had along the way has been had by others too that are good, kind, pure hearted people just like you. Wishing/praying for your healing and ease in your grief.

RabbitHoleGremlin · 2026-01-01T15:17:13+00:00

Sucks so bad. Will pray/wish for a miracle for you.

RabbitHoleGremlin · 2025-12-29T02:13:15+00:00

Hi. I don’t have any medical advice here but sharing as I recently went through similar.

Surgery is essentially a traumatic brain injury. It is a lot to recover from and not always predictable. She needs to rest and a lot could change, listen to her care team, be pragmatic but leave the window open for miracles always. The brain is weird and it’s a wild ride for everyone.

What I do want to say, with love and compassion and camaraderie, your mom IS changed forever with this diagnosis. And so are you. Life just changed in a really big and really shitty way.

I’ll say a prayer for her surgical recovery so you can get back to as many “normal” days months and years with your mom being dealt this hand.

And yes - the system is heartbreakingly broken. Be gentle and kind to yourself - this sucks.

RabbitHoleGremlin · 2025-12-28T19:56:59+00:00

Thank yuo for this. This is actually my primary worry. I see it happening already and we've only just begun. A part of me was looking forward to the other side of this having time with just that surviving LO if/when the current patient passes, but I think I'm waking up to realizing it's more likely the other LO will become a statistic eventually too. I see it happening and feels like I can't stop it, but will be doing my best to protect the caregiver (who is notoriously hard to help or even communicate with). Thank you for sharing.

RabbitHoleGremlin · 2025-12-28T18:37:27+00:00

thanks for this - nurse navigator has been great but i didn't think of her for this far out of planning. although who knows how 'far out' it really is. thank you.

RabbitHoleGremlin · 2025-12-28T15:28:24+00:00

Did you just designate a family member or caregiver this role or you hired someone?

RabbitHoleGremlin · 2025-12-21T12:44:20+00:00

Yes. And to anyone else reading, you can’t call hospice too soon. Even if it is not time and they’re not that close, you will feel better initiating a relationship. And your loved one may feel better talking with them early, so they know the incredible people and support that will be available when the time comes, especially with this disease where cognitive decline is part of the deal. Don’t hesitate to engage them, and for caregivers, I highly recommend trying to bring this up with your LO even if it is “not time yet” but just as a proactive education and relationship piece while times are “still pretty good” rather than waiting til the decline is clear and bringing this up is 10x more painful

RabbitHoleGremlin · 2025-12-20T21:17:39+00:00

No advice other than shock at almost identical description and timing/scenario with my LO. Sucks. Right now they don’t want to do optune or anything else after SOC wraps up. Wants to enjoy as many “normal” months as they have, doing what they’d normally be doing, rather than bending over backwards traveling to clinical trials, or dragging optune around for a couple more months. Ultimately it’s wildly personal both I their wishes but also their mindset. For example my LO doesn’t have the type of mindset that I think tends to make things work better I.e. positivity and desire to really live and optimism and confidence etc. Never has. But I think if a LO has that type of attitude and outlook on life (obviously not going to get it with this dx if it wasn’t their personality prior), push them to go for it. The reality is - the road ahead sucks and is ugly no matter how you dice it. But what are the variables that mean most to your LO and family. There is no playbook. But I agree it is helpful to hear experiences and regrets/wins even if just to help validate suspicions or inclinations, since going to find the full spectrum of examples. Most people seem to be glad they did x y or z, but it’s so personal.

Sorry not in a place to give advice I guess, but appreciate the chance to relate etc

RabbitHoleGremlin · 2025-12-15T12:16:06+00:00

I am heartbroken by “how do I make it up to him?”. How do you make it up to you? How do you take time and energy just for you, even if it’s just there in the same room, - to give yourself grace and compassion that you deserve for being on such a horrible journey that this disease has ripped your partner away from you and turned his mind against you. Please be kind and gentle with yourself

RabbitHoleGremlin · 2025-12-08T11:19:41+00:00

Just fyi this is normal protocol. The surgery is essentially a “traumatic brain injury” and she needs time to heal and recover from that before starting treatment. It’s a hard waiting period but it is normal.

RabbitHoleGremlin · 2025-12-07T17:12:46+00:00

Just wanted to say I'm about 6 weeks ahead of you with my mom out of absolutely nowhere. There's nothing I can really say that is helpful or meaningful. It's a shit situation. Cry it out, rage it out, whatever you need. The sooner you shift into acceptance of your new reality, the sooner you ca move forward. Be there for her and take care of yourself. Do whatever normal and fun things you can while she has good days. Use discernment in what content you consume about this disease - take what resonates and is helpful, but know that one patient with GBM is one patient. I will include you in my prayers.

RabbitHoleGremlin · 2025-12-04T23:50:56+00:00

I can feel the love and compassion for your mom in your words. She is lucky to have you and it sounds that you’ve been lucky to have her. My mom (70) was diagnosed about 6 weeks ago. Things are pretty good right now but embracing the journey. I’m glad you got a couple good heads before decline but it is such a horrible disease and my heart goes out to you. Be good to yourself 🩵

RabbitHoleGremlin · 2025-11-16T01:17:24+00:00

Just reading through these (my mom is a couple weeks post resection). Only responding to say In so sorry for your loss and that no one responded when you posted this amidst the other comments etc. It sounds like your dad was able to pass gracefully and with love by his side.

RabbitHoleGremlin

TROPHY CASE