January 20, 2020

Final day for this round of chemo. Julia's had an OK day. ~~~~ I just wanted to clarify what I wrote yesterday, as some of the comments suggest my words were misunderstood. At no time did the NP say anything remotely like, "She's dying anyway, what's the point?". Words such as "comfort" being used along with an apparent hesitation to try seemingly-simple things (such as drain more fluid), felt like it boiled down to a "why bother" attitude. But no one, not even the oncologist I didn't care for last January, has ever said anything heartless or outright dismissive. Julia'a team has been overwhelmingly amazing. I wrote the majority of my post at home yesterday, after a phone call update from Reed, then as soon as I got to the hospital I saw her red rash and got the "she's been like this" response... and so I was super annoyed and quickly amended my post. I probably could have been more clear with my words. . Today her vitals have been the same, no temperature, no cold hands and feet. No obvious new concerns. Last night, after I read everyone's comments, I sent Reed a text with specific things to ask about today. So many professionals and people with personal experience had suggestions, so I'll just copy those here with the team's responses: 1. Are we convinced g-tube is still in correct place (and nothing is leaking internally) / peritonitis. (How is placement confirmed? And when was the last time this confirmation has been done?) -- An x-ray on Saturday indicated it is in place and behaving correctly. 2. Has fluid from around g-tube been swabbed and cultured? -- Only minimal stomach contents have seeped out. No pus or anything concerning. 3. Has staph/strep/MRSA/c diff been ruled out? -- Blood and cultures are done regularly (and post-rash), and all of these are tested for every time. They have all been negative. 4. Could this be a reaction to chemo? It appeared shortly after medication started. 'Skin rash’ is considered a common side effect. If this is the case, is it a concern? -- They will talk to oncology. 5. Confirm the rash has been circled with marker, and that her belly has started to be measured with measuring tape. -- Both have been done. They are more interested in belly hardness and lab results as indicators of how things are functioning inside in relation to pressure. 6. Is there any reason to think Gabapentin could be contributing to swelling / redness. Apparently many people have this reaction, and it can start “quite a while” after initial use. If this is suspected, is there another medication that could cover the possible nerve pain?-- They are pretty convinced the progression of disease is causing leaky vessels. 7. What does her head wound look like? -- It got worse after it was initially found, as expected, now it is scabbed over and well into healing. Reed confirmed. . Other notes: Infectious disease does not think this rash is infection related. It's not warm, raised, or textured. She's had no fever the last two days. And she's already on the antibiotic that would be used to treat cellulitis (that was the mean concern). They seem to be leaning more toward chemo reaction or skin breakdown. They are also concerned about draining too much fluid because they don't want to get to the point they are required to use 'pressors' (spelling?). My understanding is these can kind of force a higher blood pressure, but they come with their own side effects, and some might be more severe since her limbs are already randomly cold. They might pull blood away from the extremities or something. I don't have much info on them. But it sounds like the team would like to try all other reasonable measures before resorting to pulling off more fluid and compensating with these medications. (Happy for comments from people who are familiar.) ~~~~ Reed is home right now for just a few hours to see his little guy! He is just tickled by all the fancy things Gabriel can say right now =) He started off with "Snacky bar. Climb. I get it." And Reed said to show him, so we watched Gabriel push his art table all the way down to the counter and help himself to a treat! Reed was so proud. And for the first time, we got to watch a toddler stall when it was time to go back to Charlene's <3 They can really just totally ignore you. So I wanted to get this update done, and then Reed and I are heading back to CHOP. I have a video that he took of sweet sleepy Julia right before he left. In comments <3

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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

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