First, GREAT that your wife continues to do well and praying she continues to respond to the chemo!! I'll be cheering y'all and all the other GBM patients on. Please keep me/us posted how y'all are doing. It means a lot.

So...I've delayed responding...because my husband passed away peacefully at home Tues, Oct 24th, at 11:40pm, BUT it took hospice an hour to get to us, so confirmed at 12:40AM on 10/25.

Rick had his first seizure (only one I'm aware of) on 10/2 , spent 3.5 days in the hospital as all his electrolytes were below normal and oxcarbazepine proved too dangerous for him. Thankfully he was safe in his recliner when it happened, so didn't get hurt, but I have no idea how long the seizure lasted bc I was taking a shower. It was quite the electrical disturbance to witness and he was slow coming out of it, so I called an ambulance. An MRI was done during the hospital stay, showing "stable, no tumor progression" and then later said to be "slight decrease." We were relieved and had plans to start next chemo cycle on 10/19. When he was released from the hospital on 10/5, he did require more caregiving bc loss of bladder control started much to our dismay, requiring pullups, and his aphasia worsened. He did okay until Wed, Oct 18th, when he stayed in bed all day (daytime caregiver's 2nd day), and I'm thinking due to all the med changes, etc. But I called for an ambulance about 5pm because he was refusing my help and a bit argumentative, thinking he may have a UTI. BUT all labs, urine checked okay; doctor said this was "the glio." He had two agitated episodes in the ER before they finally gave him some Ativan. The doctor asked 2x if Rick was already on hospice, but hinting really. She said she didn't have a valid reason to admit him, so sent us home via EMTs, with a Rx for Ativan q4h and said she'd pray for us. I totally understood, knew this was my sign...So on 10/19 I called Oncology and told them we're stopping treatment, let's start hospice instead. Fri morning, 10/20, on our 33rd anniversary, I enrolled Rick in hospice. And by Tues, 10/24, 11:40pm he passed peacefully. I had no nighttime caregiver from that Wed-Sun!! Called a neighbor a few times in the middle of the night for help. Nighttime caregiver started Mon 10/23, thank goodness! The home care service and hospice were scrambling to keep up with the rapid pace of Rick's decline. Rick took the fast lane, thankfully, once I set him free, he's suffering no longer. I tell you all of this because I want every GBM family to know how it played out for us.

We discussed early on, and somewhat often, what to do when the time came, so it was not a difficult decision for me to call hospice, just wish I had recognized it at least a week sooner! Also know, I scheduled appts with three Assisted Living facilities that I had to keep bumping since last week of Sept, but the GBM train steamrolled right over me! I had even put a deposit down (refundable) at one facility on 10/18!!

Again, calling hospice was not a difficult decision for me because Rick's main tumor was in his language/learning center and he was literally trapped in his head, word salad for him. The torture in his eyes became unbearable. He had lost the know-how to do most everything, which included instructing him how to get room to room on his walker...so there was no quality of life for him.

BUT PLEASE...y'all continue to fight! Kick some arse!! I will continue to pray for everyone in this battle.

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