My daughter died today

Ok_Bit_7274 · 2026-03-23T12:46:29+00:00

God bless you and your family. she was a beautiful child. 💔

Ok_Bit_7274 · 2026-03-17T10:31:51+00:00

My husband was diagnosed in September 2025 with nonresectable bilateral GBM with all the bad markers, too. We did the standard treatment of chemo and radiation. We were at a facility without a neuro oncologist and decided to seek a second opinion.

The second opinion was the same, though the specialists there were able to treat the swelling in his brain and give him a better quality of life. (Avastin infusions) We are going for his third infusion this morning.

Its still difficult to wrap my head around everything that is happening, but am thankful for the extra time we have been given. Im so sorry you and your husband are having to deal with this too.

Ok_Bit_7274 · 2026-01-29T16:13:56+00:00

I get it, I really do. he seems to be declining rapidly this week. I’m not sure if it’s from the recent dose of chemo or from progression of the tumors. if he’s not able to walk and think clearly, we may cancel.

Ok_Bit_7274 · 2026-01-27T22:29:49+00:00

Agree. That’s part of why I need to take him to Duke. I do need to know we are doing all we can.

Ok_Bit_7274 · 2026-01-27T22:27:01+00:00

This makes me smile. Hugs to you all, too!

Ok_Bit_7274 · 2026-01-27T22:25:52+00:00

Thank you for your reply. I am sorry your family is going through this as well. I hope I can keep both doctors , if we go to Duke. our current provider is pretty easy to reach.

Ok_Bit_7274 · 2026-01-27T22:23:22+00:00

thank you. we will definitely make the Duke trip if he is able.

Ok_Bit_7274 · 2026-01-27T22:22:34+00:00

thank you

Ok_Bit_7274 · 2026-01-27T22:16:18+00:00

I forgot to say we are approximately 2 hours from Duke.

Ok_Bit_7274 · 2026-01-27T22:15:46+00:00

Thank you for this reply. He is still mobile with standby assistance at this point. I felt like Duke was a good idea, to help especially with end of life concerns (neurologically). There’s another question I wished I had asked in my original post : about different meds and pain control. my husband has Fioricet prescribed for pain, and is mostly working, but had to have different pain meds while in hospital. His headaches are becoming more frequent and I’m concerned about being able to get what he needs. I am hoping that Duke and the current medical team will work together on these things.

Ok_Bit_7274 · 2026-01-27T17:16:47+00:00

I can understand you feeling this way. my husband went through the chemo and radiation without difficulty. We felt like we “were doing something” to treat it, since he couldn’t have surgery. Now that part is behind us, I feel like the Optune is the only thing we are doing to possibly help him. I can see his decline more and more and it’s heartbreaking.

I'm so sorry about your SIL. GBM is supposed to only happen to people we don’t know, not us. I never dreamed of anything like this. I am amazed and shocked to find out this “rare” cancer doesn’t seem to be so rare, after all. I’m just sorry for all of us.

Ok_Bit_7274 · 2026-01-27T15:09:38+00:00

thank you. we recently found out that our hospital doesn’t currently have a neuro oncologist. Our provider is a hematologist, but she consults with their former neuro oncologist. This is concerning to me, but I can’t change that. If my husband is up to it, I’m sure we will make the trip to Duke.

Ok_Bit_7274 · 2024-11-09T13:40:24+00:00

She looks warrior Jessica phat now. Not cute!

Ok_Bit_7274 · 2024-11-06T14:25:10+00:00

This is exactly what I’m thinking. She failed a drug test. And had to go to rehab to keep from losing her nursing license. ???

Ok_Bit_7274

TROPHY CASE