Ugh. This mucus. We feel so bad for Julia... it's a non-stop fountain out of her nose and mouth again. It definitely comes and goes with the chemo cycle, but we're not always quite sure what causes it. We know it picks up when she gets fluid right before chemo, but we're not sure why it has been getting bad at this point - something to do with getting all the blood? We have no idea, but it's NON STOP. Like... she needs her nose wiped easily 3x a minute. Every minute. All day. She constantly has snot on her face, she's coughing, and gagging, and spitting, and ugh. She just has to be miserable.
The team is looking into more options again. We added another medication last cycle and gave it some time to work, but clearly things are still just way out of control. Other than the snot waterfall, she's had an OK day. She was up all night and threw a Julia-sized fit when Reed finally had to go to bed. So she's slept most of the day, and with her snot-induced vomiting, she's gotten several doses of her medicine which make her sleepy.
She had a combo session with speech + OT -(video in comments). You can see how fussy she is with all the snot =( They didn't wake her up or anything, she was already awake and 80% grumpy. Their goal was just to get her to communicate with her picture board, and you can see she does that several times while asking for a tissue! So even though she's not super happy in the video, the communication progress is really great =) ...I hate that she has to point to the picture of the tissue... but it's also kind of adorable.
So, OK day other than snot. I get annoyed if I have to blow my nose a few times an hour... and yet somehow this girl just keeps smiling <3
In support of Childhood Cancer Awareness Month:
Parkway Run & Walk - Team Jaxson
This is a FANTASTIC donation opportunity. 100% of every donation goes directly to pediatric research and care at CHOP -- Julia's hospital. Every year, thousands of people walk the Benjamin Franklin Parkway in Philadelphia to raise funds for the Children's Hospital of Philadelphia. Last year, over 9,000 people participated and raised more than 1.3 MILLION!
This year, (unofficial) Team Julia is proud to stand beside (official) Team Jaxson! Jaxson was diagnosed with ATRT just after his first birthday. ATRT is the beast we initially thought we were fighting, and the statistics are grim. Jaxson underwent 1.5 years of chemo/radiation and he's been NED since 2016! That means NO EVIDENCE OF DISEASE! Thanks to the lifesaving treatment and care provided by CHOP, Jaxson just went to his first day of kindergarten =)
He's now a Parkway Ambassador, and his team is raising funds for this years Parkway Run & Walk. Definitely consider donating, and if you're super motivated, join everyone on September 29th!
Donation amount ideas:
$7 - Jaxson's age (5) plus Julia's age (2) <3
$15 - "I'm sorry they ram that port needle into your chest" -- see picture
Grump-PT video in comments.
YouTube: https://youtu.be/MoKZI7CApwA .
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* *************************************
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. You can find them all on my Facebook page or Julia's website <3