January 24, 2019
I know many read with bated breath until you see confirmation - so, she's still here. I'll get to her update in a moment.
I've written this part many times and kept deleting it. That's why this post is so late... I know you guys start looking for it around 10:30ET. I'm watching the time tick by as I think about what to say. I do not want any negativity associated with Julia... you know, beyond her fighting for her life. But it has come to my attention that there are individuals out there who are using Julia's story in an effort to solicit money or gifts for themselves. One woman has the audacity to still remain my "Facebook friend" even after my sister contacted her. And we know she saw it because she immediately deleted all evidence of her disgusting behavior. I'm still deciding the best course of action. But in the meanwhile, please know that:
- Official updates will only come from two sources: my personal Facebook account (Amy Largent) and Julia's Facebook page (JuliaAdamsCancerFund).
- Julia has one official website for our non-Facebook followers: juliaadamscancerfund.org.
- Her website has the info for the ONLY legitimate fundraising efforts (GoFundMe, T-Shirts, local fundraisers, mailing address, contact info, etc.)
- All other (very generous) fundraising efforts are on hold right now as we decide the best way, if any, to validate people's intentions. It's a shame a few people ruin it for many, but we're constantly reminded that that's life.
- My sister and several friends help manage Julia's unexpected popularity from my personal Facebook - they respond to messages and comments in my name, and usually announce themselves as a helper.
- My sister, Laura Jean, manages non-profits and social media accounts for a living. Julia is her only niece. She is taking scamming and identity theft concerns very seriously. Thankfully, given her career, she already has the resources in place to take legal action, if required.
- That said, PLEASE continue to report any concerns to her or myself. Don't feel like you're inconveniencing me. I absolutely want to know if some POS is attempting to profit off my sick child.
- And please DO continue to share Julia's story. It being shared so much is what has given us a fighting chance. We appreciate every share, every prayer, and every message on Julia's behalf. Just don't claim to be her aunt and attempt to scam my followers into a free "curvy barbie" (whatever the hell that is).
OK. Back to Julia. The wonderful little girl we're all here for.
We're on day two of not seeing her left eye open at all. Her face is very swollen from the chemo/extra fluids. We're hoping that it's just a little too puffy for her to crack open, rather than a sign the cancer has continued to advance. But we just don't know for sure. Her heart rate has been in the 140s today and they are keeping an eye on (possible) pain management beyond what she's regularly getting. ET is in the low 70s (improvement), and BP was last recorded at 124/77 (continuing to be REALLY GREAT with the new meds!). Her temperature is staying down, so no crazy infections or responses to chemo yet. And she had an Xray today to check for fluid buildup, specifically in the lungs, and everything looked OK.
Last night she had lots of secretions and the team really struggled to suction her effectively. So today she's on a new machine that helps loosen everything up and promotes coughing. She doesn't really cough, but they think it's making them more accessible. She's also now back on a ventilator for breathing assistance. She wasn't struggling, but they agreed to give her a little pressure support for comfort, if nothing else (thank you to the respiratory therapist who suggested we ask for that!) Julia is still initiating all her own breaths.
Her feet and hand braces are back on the official schedule, which is good. They stopped using those once they switched to 'comfort care'. They said they're likely not super comfortable to wear... and, well... what's the point when you're terminal, right? But I'm glad they're back on - for if and WHEN Julia beats this, we want her to be able to use her cute little feet just fine =) I did ask about the neck brace and swelling. They take the neck brace off 2x a day for skin care, and when they put it back on, it's loosened appropriately. It's only providing the most minimal of support for her neck, and due to how her face puffed up, it looks a lot more tight than it is.
Many have asked what the chemo plan is. It looks like this treatment is 5 days of IV meds, 1 day of some sort of recovery booster, and then 3-4 weeks of watching blood counts and letting her body recover. After that it repeats. This is roughly a 3-month regimen. It makes me uncomfortable to even think that far out given what we're expecting... so we're just taking it a day at a time and seeing how she does. But if there is a long-term, apparently that's the plan. Her next MRI is expected to be a few weeks out if there is nothing concerning in her vitals before then.
So many people ask what specifically to pray for. Right now, we'd like to see her get through her final 2 days of chemo with no crazy reactions. And we'd REALLY like to get some physical movement out of her again. It's almost 48 hours of not seeing that little eye peek open, but it already feels like forever. So that would really be wonderful.