Barry's Summer Update
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Barry Crain
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Barry Crain
I so apologize for not updating sooner. It's been some very busy days.
May Scan: The last time I posted, it was right after Barry had a scan that showed a blooming area into a left ventricle, which circulate cerebrospinal fluid. Dr. Grimm (yes, that's his name,) suspected leptomeningeal spread. Right away, Barry was started on Avastin, which reduces inflammation, and Lomustine, a walloping chemotherapy that can only be given every six weeks. Lomustine is what they call a "salvage therapy" that only buys time, it doesn't cure.
At this point I am beyond calling every single clinical trial possible. Nothing is open for all sorts of reasons. Now I am looking for "Expanded Access" which may or may not be covered by the drug company donating their products.
June Scan: The Avastin + Lomustine combo did reduce what was creeping back in the scans, but the tentacles of the cancer are still on the move. Barry is starting to lose words. The second surgery was right through the areas of visual information. I don't know if Barry can manifest anything in his artistic mind like he used to. He's not as fatigued as he was and I'm trying to stop the weight loss that is happening from being on Avastin.
July Scan: There is a new gremlin brewing right on the edge of the Wernicke area that controls Barry's speech. We're reaching out to the radiation oncology team to do some sessions of photon beam therapy. Because of the new gremlin, they're stopping the Lomustine and switching to Carboplatin.
We are going to a consultation at Shirley Ryan to try to stop the cachexia and to get Barry into some possible day rehab.
Today, (Thursday,) Barry's oncology team met with a drug manufacturer to try something out under Expanded Access, but we won't know what happened with that discussion until next week. I so hope it went well.
We haven't planned a luncheon at Chief O'Neil's yet because Barry doesn't have the stamina to last beyond two hours socially. And I say "yet" because I am hopeful that yeah, he'll be able to get a little stronger and that we can all get together.
During all of this, your help has been essential, and we are beyond grateful.
Because of your help, I was able to finally get Barry a comfortable mattress so that he could get quality rest. I used the food delivery to get essentials from the grocery store when there was no one else here to take care of Barry and I couldn't leave the house. Your donations have helped us pay for parking at the hospital, for the protein drinks and powders that I'm trying to get Barry to drink every day, (150 grams of protein a day is HARD, y'all!) and just for keeping our head above water when it comes to all of the bills flying in. Just to give you some idea, I was still paying off the emergency room visit from March of 2024. It's been so so brutal, but you all are pulling us back from the brink. We thank you all SO VERY MUCH.
May Scan: The last time I posted, it was right after Barry had a scan that showed a blooming area into a left ventricle, which circulate cerebrospinal fluid. Dr. Grimm (yes, that's his name,) suspected leptomeningeal spread. Right away, Barry was started on Avastin, which reduces inflammation, and Lomustine, a walloping chemotherapy that can only be given every six weeks. Lomustine is what they call a "salvage therapy" that only buys time, it doesn't cure.
At this point I am beyond calling every single clinical trial possible. Nothing is open for all sorts of reasons. Now I am looking for "Expanded Access" which may or may not be covered by the drug company donating their products.
June Scan: The Avastin + Lomustine combo did reduce what was creeping back in the scans, but the tentacles of the cancer are still on the move. Barry is starting to lose words. The second surgery was right through the areas of visual information. I don't know if Barry can manifest anything in his artistic mind like he used to. He's not as fatigued as he was and I'm trying to stop the weight loss that is happening from being on Avastin.
July Scan: There is a new gremlin brewing right on the edge of the Wernicke area that controls Barry's speech. We're reaching out to the radiation oncology team to do some sessions of photon beam therapy. Because of the new gremlin, they're stopping the Lomustine and switching to Carboplatin.
We are going to a consultation at Shirley Ryan to try to stop the cachexia and to get Barry into some possible day rehab.
Today, (Thursday,) Barry's oncology team met with a drug manufacturer to try something out under Expanded Access, but we won't know what happened with that discussion until next week. I so hope it went well.
We haven't planned a luncheon at Chief O'Neil's yet because Barry doesn't have the stamina to last beyond two hours socially. And I say "yet" because I am hopeful that yeah, he'll be able to get a little stronger and that we can all get together.
During all of this, your help has been essential, and we are beyond grateful.
Because of your help, I was able to finally get Barry a comfortable mattress so that he could get quality rest. I used the food delivery to get essentials from the grocery store when there was no one else here to take care of Barry and I couldn't leave the house. Your donations have helped us pay for parking at the hospital, for the protein drinks and powders that I'm trying to get Barry to drink every day, (150 grams of protein a day is HARD, y'all!) and just for keeping our head above water when it comes to all of the bills flying in. Just to give you some idea, I was still paying off the emergency room visit from March of 2024. It's been so so brutal, but you all are pulling us back from the brink. We thank you all SO VERY MUCH.
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Scott Jared 8 days ago
Scott Jared 4 days ago