Not a bad day for Julia. She is sleeping a lot, pretty much on and off all day. Her vitals have been good since starting on more regular pain relief. Her ET is slowly climbing - up a point or two every few days. It usually hovers right around 35, which is normal. When things were bad in January it was rising a point every few hours, and I think the highest we saw was mid-90s. We were just told it was the brain stem tumor doing brain stem tumor things. As the tumor shrunk, her ET returned to normal. It's still decent, but we've noticed it's starting to climb and not necessarily coming back down. (ET monitors a patient's ventilation effectiveness. You can google 'End Tidal CO2' for info.) She's overall a little more weak with her right hand. If she's at her most awake, she can still control the iPad pretty well. But it's really slow if she's tired. However, she can still fidget enough to get the pulse-ox off both big toes! So now it's on her left hand where she can't reach it =) She dislikes her baths as much as always, but no matter how angry she is, she always has smiles for daddy. Reed came back into the room mid-bath-fight and she pointed right at him, smiled, and mouthed 'dadadadada'. <3 There is certainly something to be said about fighting this fight as a child. There's no stress at all on her shoulders. She doesn't understand what's going on. She's not worried. She's doesn't know she's missing out on life. Her needs are so simple: daddy, cuddles, iPad. I'm amazed that after well over a year of lying in bed, with everything she's gone through, all the surgeries and chemo and rehab... she is still happy. Tired. But happy. .
I believe more labs will be done tomorrow to see what her white cells are doing. We're hoping they've come back up with this scheduled pause in one of the chemo meds. If so, they should start back up for another round. If not, they will need to consider stopping the other treatments for a week. ~~~~ Gabriel had a cold weeks ago, and it mostly got better. His cough lingered like they tend to do. But the last few days he seemed to be getting worse again. A little fussier, clingy, not much of an appetite. Last night he was miserable, and this morning he spiked a fever and threw up his breakfast, so Aunt Charlene took him to urgent care. Poor little guy has a double ear infection =( So they started him on some antibiotics, and I really hope it takes the edge off soon. They recommend I stay away for a few days while the antibiotics kick in. So today he's been pretty pitiful, understandably so, and just says "hold you me" in his sad little voice. Charlene told him he was going to the doctor, and he said "call doctor mommy" <3 =( <3 ~~~~ Pic tonight: Sleepy Julia, sick Gabriel (couldn't stay awake while waiting for his prescription to get filled), and a beautifully made dream catcher from one of Julia's Facebook friends <3 <3 Video in comments... I was going to at least get Julia sleeping, but for the last hour it's just been fussy-getting-chemo-Julia and that's not a sweet video. So I found a super sweet video from Christmas 2017, and Charlene finally got Gabriel singing. He's not rapping this time, but you can make out some of the lyrics <3
YouTube: https://youtu.be/jXB7sia8y4Y . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph Car Magnet: https://tinyurl.com/y4nxr3lr
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