She's still here! More on that in a minute.
I shared an update recently about people trying to use Julia's name for their own financial gain. Apparently more of that is going on, and I just want to make you all aware so no one profits off of her illness. I understand there is at least one post trying to sensationalize our financial situation, saying we desperately need donations (I assume with a convenient "donate now" link). This is NOT us. Everyone has been more than generous, and we are doing OK right now. Julia has one GoFundMe site (links will now be at the bottom of each post), anything else is fraud. GoFundMe takes this illegal activity very seriously - they just need to know about it.
And while there are a few legitimate fundraisers in the works by my friends (all of which have/will have information on Julia's website [link at bottom]), we will NEVER privately message you announcing the fundraiser and/or asking for personal information or money. While some of these third parties may be well-intentioned, we are not involved and cannot guarantee they will use your money/donations "as intended". Please be wary.
If there is something Reed and I, on behalf of Julia, would like to promote - I will mention it right here in one of my nightly updates. I post once a day from my account, around 10:00-11:30pm EST. I copy my posts to Julia's Facebook page and to her website. Anything outside of this scope is NOT ME. There are horrible people out there, and unfortunately we can't prevent it, and we can't police it. We can only address what is brought to our attention, and we WANT you to bring it to our attention.
All Reed and I are asking of you right now is your TIME. We appreciate you coming here every night (or morning) to read Julia's latest update. We appreciate all the thoughtful words, questions, and suggestions for her care. While we appreciate EVERY donation, letter, and gift, we really just want you to stay invested, and share her story, while she continues to fight this. Your support in this way means everything to us right now, and we're not looking for anything more.
Please DO share our posts, and please DO feel free to make your profile picture any of Julia's pictures I have online. I love seeing her face attached to new names from around the world <3
Hopefully adding the links to the bottom of my posts will handle the nonsense, and we can just focus on our little warrior going forward =)
~~~~~ Ok - Now Julia <3 ~~~~~
She is currently finishing up her first blood transfusion since starting treatment. This is a typical requirement for her chemo. She's received several transfusions throughout her recent surgeries, and they've all gone smoothly. She continues to have no fever, which is great! She's still just "sleeping" (I put it in quotes because we can't be sure that's what's going on, but it's what it looks like). Her left eye has been mildly responsive to flashlight checks today, which is really great. A day or two ago it all but stopped responding, so for it to react now is encouraging.
It's amazing how quickly your measure of a "good day" changes during adversity. Three months ago, a good day for me would have been making it to dinner without my two kids driving me crazy. Today, it's Julia's last remaining way to physically move - the automatic response of her left pupil - remaining even slightly functional.
(Have I said 'hug your kids' yet?)
Her vitals are steady. Heart rate in the 130s/140s most of the day. Her ET has been between 58-62 (trending down!). Her BP was at 134/92 at last check.
The PICU doctor did suggest bringing her sedation down a bit in the interest of seeing if we get any sort of response out of her. Several times recently, I have incorrectly said she was not currently on a sedation medication. That is because... I'm not a nurse and have no idea what I'm talking about half the time. She's on dexmedetomidine which is definitely a sedative! I think when I read this word, I assumed it was her steroid, as it sounded a lot like the steroid my dad was on. (She is on a steroid, but this is not it.) So Julia -IS- being mildly sedated. This suggestion was just discussed today at rounds and has not begun. Possibly tomorrow.
In non-medial news: The warrior colored picture are coming in and they are ABSOLUTELY EVERYTHING! I can't WAIT to share a picture of all of them with you. I stopped by my office today with Charlene (sister-in-law who is watching Gabriel) and her kids, and we spent so much time opening envelopes of these drawings! (The mailman finally asked my office, "What's up with all the mail!?") We read every message, and I'm going to find a great way to share these with all of you. If your kids colored a picture, we would LOVE for you to send it to us!
(The coloring page can be saved/printed from this link: https://bit.ly/2Tk5qGL- My work address [to mail them] is listed on Julia's website below. Thank you!!)
**************************** ****** Official Links ****** ****************************
If you're new and want to know what's going on, my first post about Julia was on October 30th of last year. You can find them all on my Facebook page or Julia's website <3