January 19, 2020
Day 4 of 5 for new chemo. She's had another OK day. The biggest concern is her belly is getting bigger again, with a new red area. I thought I saw the size increase several days ago, and Charlene agreed, but others didn't. Yesterday Reed said it was noticeably larger, and today it definitely is. And today there is a new red 'rash' area on her mid-stomach. I'm getting annoyed at people telling me "She's been like this". More and more recently I'm having to pull up pictures to show she has NOT 'been like this'. I have pictures from 3 days ago showing not a touch of red on this part of her stomach... Both Reed and I were pretty annoyed that he almost had to convince the NP to try draining more fluid. Like, Julia already has a drain in there. They ARE currently draining. Apparently they have slowed down to 1/6th of the original drain speed, due to blood pressure issues. Which makes total sense - it's hard on the body to drain off so much fluid. However, he had to actually ask them to try increasing the amount slightly. Because clearly the current rate is not keeping up with how quickly it's filling, as her belly has grown in just a few days. The original rate negatively affected her blood pressure, but the current rate isn't keeping up with demand. So doesn't common sense suggest to try "a little more" and see what happens? They don't need to double the speed (which would still be less than originally), but maybe up it by 20% and see how she does? So I guess they upped it by a small amount and she has done fine today, so I'm going to make sure they have a plan to increase the amount again. The word 'comfort' was said several times. But anyone can go back to my January 12th comparison picture, and tell me how 'comfortable' they think Julia was with 5 liters of fluid in her abdomen. I'm willing to bet having to pump 'dangerous levels' of pressure into lungs to keep them inflated is not comfortable. Not peeing is not comfortable. Organs failing is not comfortable. So, right now, I only hear "comfort" as "she's dying anyway, what's the point", and that's not going to fly. I haven't personally spoken to this particular NP, so I'm hoping Reed just misunderstood the conversation. But I'm not happy with how it was relayed to me. And I'm definitely not happy that I'm being told "she's been this way" in regard to this red rash. . Other than that, she's done fine today on temps. No fevers. She had chilly hands and feet for a period of time, so they tried some heating packs, and those seemed to warm her up. Since then she's seemed pretty comfy. She's opened her eye several times, and possibly made intentional contact. Reed was giving her kisses at one point, and he's as positive as he can be that she tried to nuzzle into his beard like she loves to do <3 So that was really nice. ~~~~ Picture of how she's spent every January 19th so far. And I took a video showing her larger belly and this rash. Open to suggestion if anyone has seen anything like it. The slight glaze on it is hydrocortisone cream. The original redness was around her belly button, and that seems to be looking a bit better. Video will take a minute to upload.
YouTube: https://youtu.be/UaQefDFVjV0 . . .
*********** ~~ Julia Adams ~~ *********** ************** Official Links ************** ****************************************
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Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3