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December 1, 2019

Julia's having a decent day today. Tomorrow is her birthday, she turns 3! She had her PICC line procedure yesterday, so she was sedated and it messed with her already-bad sleep schedule. So she was up all night, and has slept most of the day. She did a CPAP sprint on the vent (her doing all the work with just a little pressure support) and that was surprisingly her best time of the day as far as stats and comfort. Later her respiratory rate got back up to the 60s, so they upped her vent support and she settled out. They performed another ultrasound today, focusing on the lungs and heart, to check for more fluid buildup. Given her tiredness and very clear dislike of being moved again, I assume a pocket of fluid is forming somewhere. Re-positing her very clearly causes pain, so we move her carefully and she seems to be comfortable if left alone with her iPad. I believe the ultrasounds will be read by more members of the team tomorrow. Another drain might be needed. She tolerated all her meds great today. Tomorrow we still have a team meeting, so we'll discuss if there is more we can add to the treatment plan. Some people have asked when they expect to see results. They don't. This is all considered palliative, so there is no timeline and no additional MRIs scheduled. We're hoping she responds better than expected, and if that's the case, we'd expect to see a clinical improvement "sometime". But the plan is to just keep doing what we're doing and see how her cancer reacts (assuming we can keep her comfortable). But considering everything, she's had a very relaxing day. She's asked for lots of cuddles, and been content holding hands and scrolling on her iPad. ~~~~ Last night we attended the annual Heroes Hop Dance - an event to raise funds for St. Jude Children's Hospital. This year Julia was chosen as their 2019 Hero of Hope. Proceeds from ticket sales went to St. Jude, while our family was given really wonderful gifts and recognition from the community. Julia received a Senatorial Award for her bravery. We also received gift cards, two adorable Christmas outfits (that we'll try our best to get Julia to wear!), new handmade blankets, ornaments, a beautiful framed painting, and more Paw Patrol stuff for little man! It is all going right under the tree for Gabriel to open in a few weeks <3 Thankfully, Charlene and Kinley were there to stand on stage and accept the gifts on Julia's behalf. I had a hard enough time keeping it together just hearing some of her story being read out loud... I lasted through the gifts, but then they asked everyone to the stage to stand in a circle and they started playing "Lean on Me". I had to leave immediately. I had a very difficult time bonding with Julia when she was born. I had lost two pregnancies before her, medically-traumatically, so with her pregnancy I was convinced she also wouldn't survive. I barely thought about her, certainly not in the fawning, glowing, expectation way pregnancy is often portrayed. And that's also when I injured my back, so I spent the last half of her pregnancy stuck in a chair and barely getting around with a cane. I was in the delivery room still convinced I wasn't leaving with a child. So when she was born, I was actually surprised. But postpartum hit hard and the bond was slow in forming. I remember rocking her as a newborn and "Lean on Me" came on the radio. I sang it to her, promising I'd be a better mom for her when she was older and going through things that I could better understand. Bullies, sibling fights, loss of pets, breakups... the variety of issues I could help her through as an adult. It kind of became our secret song together. So when I heard it at the dance all of those forgotten memories came back and I couldn't get out of the hall fast enough. Manny came out and stayed with me in the parking lot for a while. So... unexpectedly emotional. Well, probably very-expectedly emotional. It also didn't help that Charlene is a toddler-magnet, and seemed to attract the only Julia-aged girl in there. So she hung out right at the head of our table the whole night. In her cute little Christmas outfit and fancy boots... probably exactly what Julia would be wearing. So, that part was rough, but I guess moments like that are expected while going through something like this. The rest of the night was very nice. They played music, Kinley danced like she was the only one in the room, and they did a funny game of musical chairs... which I believe Charlene won. With questionable technique. Santa stopped by and handed out candy canes, there was food and desserts, a raffle and 50/50, and homemade chocolates for sale. A burly biker man won a bunch of nail polish, which he delivered to Kinley (she was very thankful - It included a new top coat that she was going to buy with her Ulta birthday gift card... now she can buy something else!) The event was very nicely put together. We're so grateful Cheri, the organizer, chose Julia as this years Hero <3 The recognition and support from the community was really wonderful, and it looks like they raised some good money for St. Jude =) ~~~~ I didn't get pictures of everything, but I included some of the thoughtful gifts we received <3 And of course a picture of Julia, scrolling through her iPad, under her new Paw Patrol blanket. I just stood up to get a video, but apparently she's mostly asleep. I'll add it to the comments anyway.

********** ~~ 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): || Coupon code: danaboyd

Chordoma Foundation:

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

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