World turned upside down
Hi everyone, the past 2 1/2 weeks have been an absolute whirlwind and the hardest of my life. My dad (61) has been diagnosed with Glioblastoma. I wanted to make this post to tell his story and hopefully connect with the community and get some helpful advice on how to navigate this all going forward. About 3.5 weeks ago my family noticed my dad was “off”. He wasn’t his normal energetic, super outgoing self. He was distant, quiet and would only really talk if spoken to. When my mom sat him down and tried to understand what was wrong he would just say he’s tired or stressed. My dad is a master scuba diving instructor (it’s been his passion for 40 years) and a couple days later he was teaching a class when he started speaking very slow and getting confused. The students thought it was potentially a stroke so they sat him down and he was taken to the nearest emergency center asap. There they found a large mass in his frontal lobe on a catscan. My dad was mostly out of it at this point just sleeping and unable to really speak but being from New England we got him transferred to Brigham/women’s & Dana Farber in Boston right away. They were concerned about the swelling and tried to get it down and then they operated 2 days later. It has now been 12 days post operation as I type this. His current status has me so scared. He’s slowly regaining some movement but it’s still so weak and labored. (He can stand up out of chair but can’t step without assistance , he also just got off the feeding tube and can swallow normal now) He can speak but will only speak if spoken too and it’s very short answers. His memory seems to be intact but it’s almost like something is disconnected. I try to do word search puzzles with him or I give him his phone to read messages and he can’t really comprehend it. (Ex. He’ll read a text message then type a bunch of empty spaces then hit send for every message he gets). He seems to be making incremental improvements each day but it’s so hard not knowing how much of him is lost and what will heal. He was in great physical health before this and even the day before he ended up in the hospital he did a 100’ deep shipwreck dive off the coast of Newport which looking back I have no clue how he was able to pull that off. I found and watched his go pro footage( he films every dive he does) and the footage was so incoherent compared to his normal work). Tomorrow morning we’re meeting with the team of doctors and discussing the long term plan which seems to be in line with what the typical protocol is. I’m hoping there will be some clinical trials or something novel we can try. He will be transferred to a rehab facility closer to home to work on his movement and speech and I’m just praying that he can get back to a point where he can come back home in a condition where he can really enjoy the time he has left. Also idk if this is relevant but his sister died of ovarian cancer 5 years ago in her 50’s (not sure if there’s some sort of genetic component). It’s midnight as I type this so I’m sure I’m leaving stuff out but that’s my dads story. He’s literally the greatest guy I know and I’m just so scared for him and heartbroken. Thank you for listening, any advice, tips, knowledge, is super appreciated