No new concerns today, so I guess that's an OK day. Vitals are all really good. Heart rate has surprisingly been in the 120s which is the best it's been in weeks. Saturation is great with 30% support so I think they're going to drop it a bit. No fevers. White cells have recovered so she's back on her full chemo meds as of today. She's still on her course of antibiotics for whatever infection she's fighting - no new word on that over the holidays. Her stomach swelling is still there, but it's not worse. The IR team was in to determine what the new discharge around her g-tube is. If I understand correctly, they believe her stomach was a bit more swollen maybe over the night, and that swelling moved the balloon a bit (which is in place inside her stomach to prevent contents from leaking out around the g-tube), and then when the swelling went down some, it created a gap for stuff to get out. So they believe the discharge is just stomach gunk and they aren't concerned. The next step is an ultrasound either later tonight or tomorrow to confirm this swelling is fluid, and try to get some more info about it. I don't even beat around the bush anymore and just start with, "People on Facebook say it could be this, this, and this..." I'm sure they love hearing that, but I don't care. The nurses have all been very receptive to and they continue to relay specific concerns to our team, who give us answers or order more tests. I'm sure CHOP already knows this stuff (they are a fantastic hospital, and I don't want to give the impression that they are not on top of everything). But there is knowledge to be had here with Julia's community, especially with how many pediatric cancer parents follow. I've taken all your suggestions and asked about ruling each one out, so the team is aware of exactly what I want answers for, and they're working on it. But other than that, she has mostly been sleeping today. She wakes up for very short periods at a time. We're talking 5 seconds to a minute. She usually opens her eye, finds daddy, then goes back to sleep. She looks very comfortable. Reed even poked her tongue that's always sticking out of her mouth now, and she smiled =) It was BARELY a smile, but she definitely thought it was funny. I got out my camera for the 3rd poke but she was already back asleep. ~~~~ And since we find ourselves back here in familiar territory, I want to address the elephant in the room. I know she's dying. I'm not naive. I'm not uninformed. And I'm not in denial. I know. I've been involved in enough pediatric cancer journeys over this last year to know what end of life looks like. I don't need anyone to tell me what is clear as day in front of my eyes. However. Remember that we've been here before. For those who haven't followed since January, we were already given this bad news. January 6th of last year, we were told she had days to live, a week at most, and there was absolutely nothing to do. Cancer this advanced doesn't turn around. Her brain stem had already been devastated by the tumor, and "if by some miracle" the cancer shrunk, she would have no quality of life. She's never talk, see, or move again. She wouldn't recognize anyone. She wouldn't remember anything. She would never again be "Julia". And how could you not agree with that, while watching her lay there in coma, completely unresponsive, being kept alive by machines? CHOP is a fantastic hospital with amazing doctors and (unfortunately) tons of experience with pediatric cancer. This is what the culmination of medical knowledge suggested. It's what common sense suggested. With Facebook comments of, "Time to do the merciful thing and let her die", "her body is shutting down", "she's at the end of her life, stop being selfish", etc. But because we had heard from another family, with living proof, that a child in this state, with this cancer, could turn around and beat the disease... we pushed for treatment. Against all recommendations. And because of that, Julia came out of coma and enjoyed months of life. Not only that, given the stable state of the tumor, she was on her way to rehab and life outside of the hospital. Unfortunately, cancer did what cancer does, and likely mutated, becoming stronger and harder to kill. But despite knowledge and common sense, she was on her way to beating this, while being "neurologically perfect", with a body physically recovering by the day. So even though we "know what is happening", given what we've personally experience with Julia, we can't stop trying. Her life is our top priority, followed closely by her comfort. The chemo regimen she is on is mild, and no one believes it is causing her symptoms. Her advanced cancer is causing her symptoms, and we continue to do what we can to manage those. ~~~~ So as a reminder to those who wonder why we are continuing to fight, I've put together a collage of Julia smiles since the last time we were told to plan her funeral. And just a short video in the comments. I tried to get the smile from Reed poking her tongue, but she had already exhausted herself. But you can see the comfort she gets from just having Reed stroke her fuzzy little head <3
YouTube: https://youtu.be/v6Hm6L8_ybg . . .
*********** ~~ Julia Adams ~~ *********** ************** Official Links ************* ***************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
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