Trip to CA & Big News
- Casey Olson Designs
- Sep 17, 2024
- 3 min read
My parents and brother just left on a trip to CA to visit City of Hope, UCLA, and USC to see if my dad is eligible for any of their Glioblastoma trials. We had been pretty discouraged because at our Mayo appointment last Friday they told us it's very unlikely we will find a trial until he has recurrent Glioblastoma, which means we have to do something to get rid of it already and it came back (or began growing again). Since we were told by multiple places my dad's wasn't operable and the Standard Care wasn't going to be good, due to the full brain and spinal spread and the way they'd have to radiate his whole brain and spine, we lost a lost of hope over the weekend. Mayo also made it clear to act quickly with our decisions because my dad has little time left. We got very excited to possibly get the CancerNeo vaccine and then found out it could take 12 weeks to get back and that is too long for my Dad to wait. Again, we were in full panic mode. Last night my Dad's pain level was at an 8 and we were all unsure if he should even go to California, especially when it was unlikely they had any trials for him, traveling is so hard right now, and hearing more places tell him they can't help him would be too hard for all of us. City of Hope even called us yesterday and told us the trial that wasn't for recurrent already closed and we were all spiraling out of control about what to do.
7 pm last night my brother got a call from the Ivy Brain Tumor Center at Barrow. We have been trying to get a second opinion from them for weeks, you guys. WEEKS. They reviewed my dad's scans and medical records and DO think they can operate on the tumor. This changed literally EVERYTHING and it is the night before they left on this trip they found out. Now when we go to these places in CA we can find out about the trials for recurrent and do these after he does the surgery. They said they think they can get him in by October 1st and take out maybe 80% of the tumor which will buy him some time to figure out how to tackle the left over cancer in the brain and the spine.
My dad was in a lot of pain when the call came in and kept his eyes closed the whole time laying down, but still kept saying how happy he was that someone finally thinks they can help him. Every doctor we have seen for this so far has told us they cannot help him and he won't survive this. Hearing someone say yeah they do think they can do something to help the process start is major for my dad's dwindling hope.
The Mayo appointment was on Friday and he was there from 9am-5pm and all they heard was bad news from everyone we met with. We are very grateful that we kept pushing and got a second opinion from Barrow and we hope that we just found the first thing we are going to do to try to stop the spread of this tumor!
Please send positive energy that the trip goes okay and isn't too confusing, hard, painful, or hope dwindling for my dad.
Much love to all!
Comentários