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September 26, 2019

Today was rough. After my post last night, I updated a bit more in the comments. Julia had been fighting a low fever on and off throughout the day, and was VERY tired. Over the top tired. She finally woke up in the evening and appeared to be comfortable and happy, but shortly after her bath/trach care, she just really started to heat up. She got very tired again, and her fever spiked to 103.4. Her white cells are at exactly 0, so an infection right now is NOT what we want. They started her on several broad spectrum antibiotics, gave her Tylenol, and used some ice packs to try to cool her down. Most tests came back negative, but today they found the cause: she has a yeast infection in her blood. It's not a good thing, I mean, it could be worse, but her white cells will be at 0 for the next several days, so her body isn't in a position to fight this off. Luckily it did what it's supposed to and developed a fever, alerting her team to a problem. They did all the right tests, and they are happy they found it as soon as they did. They've tailored her antibiotics to target the yeast infection. The major concern right now is it reaching her brain. Around 4:00 they tapped into her shunt to check her brain juice. Still awaiting those results. She is acting 'fine' (not at all like she was when she previously had the infection in her brain, that led to the stroke), so no one thinks it's in there. At this point, they are hopeful that the antibiotics and her recovering immune system can fight it off, but it will take time. This is the first actual complication she's had since starting chemo. She made it through 12 rounds... but this one is really hitting her hard. This is why you can't just keep doing chemo, eventually it's too much. . Every once in a while someone gives me shit in the comments for "staying away" so much. This is why. A healthy person would roll their eyes at a yeast infection and slather on some cream... not the case when you have no immune system. Imagine if I gave her the flu. We're really hoping the meds do their job. But I've said it before, and I need to say it again: I have since met families on here who have lost their children to an infection, after having survived the chemo for their cancer. This is definitely a much bigger deal than "typical yeast infection". ~~~~ Other than that, she's thrown up a few times today, but so far no additional fever. Her vitals are surprisingly good: she's resting comfortably right now with a heart rate of 117 (it's been resting at 150+ the last few days). She did get some blood and platelets today, so that likely upped her comfort level. Oh, and Julia really started scratching the back of her head yesterday. I'll add a pic. She really seems to be digging at her surgery scar (which should be more than healed), but you can see she's really scratched over the entire back of her head. And her poor skin is soooo fragile from the chemo... her nails go right through it... it's like tissue paper =( There are many reasons she might be itchy, so they started her on some anti-itch and skin-protecting lotion there. We also clipped her nails nice and short, and if she keeps it up, we'll have to do a mitten. I hate taking away her only iPad hand, but we'll do what we have to. Hopefully the cream is all she needs. . I am struggling today, and I'm a nervous wreck over this infection. But I still want to get some highlights in here: --- Last night I held the trach during her string change for the first time. I normally handle the strings and neck care, and Reed holds the trach. Holding the trach is by far the more important job, and with my back spasms, it makes me nervous to be in a position where I can't stand up if I have to. So it took a lot of false starts, but eventually we got it going. Julia did great, and I was already more comfortable by the end than when I started. I think the plan is to do several more string changes like this, where I hold the trach, and then we will consider me inserting the trach during a trach change. --- Yesterday I also held her again for the first time in a long time <3 <3 Again, my back is the problem. I hold Gabriel constantly, but I'm also constantly "quickly setting him down" when something tweaks. Holding Julia is a very delicate procedure - you can't jerk her, or re-position her, she's attached to life-saving devices that can yank out, and her neck position needs to be considered. I lay next to her every time I'm down there, and we've gotten pretty good at cuddling, but I usually leave the holding to Reed. Yesterday my back was pretty well supported with however I was sitting, so I asked him to bring her to me. It was nerve wracking, and hurt pretty bad pretty quickly, but I'm really happy I got to hold her <3 We sat together for about 5 minutes and then she went to Reed. We'll need to work on ways to make that better. --- Julia had a GREAT speech therapy session today, despite counts at zero and an active infection. She was happy, and participated. The therapist is pretty confident Julia has added a few more words to her 'mouthing' vocabulary - "blanket" and "bus". They are so happy with her participation that they've upped her back to the full 5 days a week starting next week. She should be well into recovery by then, so hopefully we can start making some real PT progress =) ~~~~ Video in comments: One of Julia's friends sent her this AMAZING Peppa dollhouse! I got a video of us taking it out of the box... lots of excited O face and pointing! She should have a better time playing with it when we have her all propped up during the day. She was wearing out, but still enjoyed throwing dinosaur in <3 <3


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********** ~~ 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. You can find them all on my Facebook page or Julia's website <3




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