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January 8, 2020

Julia is doing 'fine'. No new emergencies, vitals are unchanged, and she seems comfortable. We even saw her eye open 4-5 times today, another tiny smile when Reed poked her tongue, and like, 30 seconds of Peppa watching. So a few weeks ago, Julia got worse, then they did the chest tube drain, and she was like a brand new Julia the next day. Immediate improvement. But then, a week or so later, she declined again. We were all a little confused, but just assumed... cancer doing cancer things. But the MRI last night discovered a rather large brain bleed. This is considered a hemorrhagic stroke, and they are almost certain the cause is the growing tumor. A brain bleed this size would normally result in massive swelling (as the brain is contained within the skull, obviously, and there is very little room to expand). Given the limited space, any swelling causes issues; and massive swelling, like would normally happen as a result of this size bleed, would cause serious issues, up to death. That swelling would also cause all kinds of symptoms - vital signs, eyes no longer tracking (which is why they do the 'neurological checks' by shining a light into her eye every 4 hours), and symptoms she can't tell us about like headaches. Because the swelling didn't happen, the signs didn't happen, so no one had any reason to suspect a bleed. When your brain is bleeding, two things need to be done rather immediately: relieve the pressure and stop the bleeding. Her shunt relieved the pressure, and the theory is that the area of the bleed quickly filled up 'to capacity' and the equal pressure stopped the bleeding. So as far as they can tell, this is no longer an active bleed. So there is nothing to be done. There is no medication that could help her absorb the blood more quickly, and there is no pressure to relieve. A normal healthy person would ideally just re-absorb this blood over time. The bleed occurred in her cerebellum region, which is the bottom back of the skull (where her tumors are), and the bleed spans from the left to the right. We've been told by several teams that it is 'significant'. I was wondering yesterday if this massive bleed could be what caused her abdominal swelling, as her shunt drains into her abdominal cavity. They don't believe so, because the bleed is contained in an area where the shunt does not drain from. So they don't believe the shunt has pulled off any of this blood. What it likely did, was regulate the pressure by pumping out more and more cerebrospinal fluid to make room for the bleed. So her abdomen likely did get an increased volume of CSF, but not enough to cause swelling, and it's not an irritant like blood is. So, while they can't rule it out, it's not the current theory. . We had our team meeting today with neurology and oncology, and the MRI results are as expected: the cancer has continued to advance at an alarmingly fast pace. The tumors around her brain stem have continued to grow (causing this bleeding by 'outpacing their blood supply'), the tumors at the top part of her spine have started protruding toward her airway, and there are now tumors all the way down to the base of her spine. An MRI is not a great way to determine if tumors are in organs, so no word on that. The tumors down the length of her spine are suspected to be the cause of all the organ issues we've been seeing: no longer peeing, kidneys producing minimal urine, bowels not moving regularly, lining of abdomen not absorbing fluid, etc. If the tumors were to shrink, some or all of this functionality could come back. But any positive progress with this cancer is beyond a long shot. Which brings us to the chemo. It's not working. They would have expected to see at least stability by now, and it is their recommendation that we don't continue. The theory is that while we thought the tumor was stable over the summer/fall, it was actually mutating, as cancer does, and is now a super-beast chordoma that is going to be very difficult to contain. One of the chemos she was on recently, was the same chemo she was on before (just delivered differently), and this chemo is one of the most effective against chordoma. It just stopped working, so the cancer likely did its survival thing. Our team is very aware and understanding of the fact that some families "need to try" until the end, so they had some other options to offer. None of these options are expected to work, however, they also haven't been tried in her particular choroma, so no one can say they won't work. They are based on similarities to other cancers: ATRT, gliomas, and other bone cancers, specifically. Our doctors have been in regular contact with other doctors attempting to treat this disease, and have discussed all chemo options, clinical trials, and the alternative routes we've asked about. Several chemos and a few clinical trial drugs are off definitely off the table now due to the hemorrhage (brain bleed). There are two chemos they will run by pharmacy tomorrow. Both are mild as far as side effects go (they will not make her uncomfortable). One of the options would require her kidneys and liver to be functioning pretty well, so there needs to be a final ruling on that. More importantly, she'd need to be weaned off her alternative treatment (which would be done under pharmacy guidance), as there are severe drug interactions. The other option does not require optimal kidney/liver health, and she could continue taking what she's taking with no concern. They are also going to determine if the Mebendazole could continue along side either chemo, as we'd like to give that more time to work. So, Reed and I have decided to stop the current chemo and switch to whichever option they think is best. There are no real expectations for this to work, but these one-off case studies do exist for her chordoma. I believe it is known that there are sub-types of chordoma that we don't know much about it, so no one can really say how hers in particular will react. And I've now met families through Julia's journey who have been "just as bad" and turned around once the right combo of meds was discovered. We carry no false hope that this will happen, but it definitely won't happen if we don't try. . As far as potential-pain management, she's on a good dose of nerve pain meds, Morphine around the clock, and of course her alternative medicine is "likely helping", as they put it. And those three meds together do a pretty good job at handling all pain she might be feeling, given what they know about where the tumors are located, and the organ deficiencies. And all day today she has continued to look very comfortable and peaceful. I approved a DNR order for some situations, and the team agrees with that decision. For example, if her heart stops, they will not attempt to revive with medications or compressions. But if her trach plugs or falls out, they will still clear it / put it back in. They will still give medications to handle possibilities like blood pressure / bladder / kidney issues, etc. This DNR will be reviewed and discussed regularly, and of course we can adjust it whenever. . So, not great news, but not unexpected news. With her physical state, I would be alarmed if the cancer wasn't everywhere, because then we wouldn't have an explanation. There is a super-duper long shot that she might respond amazingly well to this new chemo, things will shrink, and she'll have another turn around. So as we keep her company and keep her comfortable, we'll hope for that. Also, with news like this, there is usually an uptick in opinions from the 'just let her die' crowd. If you see comments like that, just tag me and my sister will block them. . And Reed decided to walk up 7 floors worth of stairs because the elevator was taking too long. He said it was difficult and made him tired. I reminded him he's lived in a hospital, sleeping in a non-reclining chair, and eating like, 600 calories worth of chinese food a day... for going on 15 months. He just kind of said "oh", then took a nap. Both he and I will have a lot of physical healing to do, once we can breathe again. A situation like this certainly takes its toll on your body. Even Charlene posted today that her family can't stop getting sick. Stress is a killer. . Picture today: just about 30 minutes ago she decided to wake up and watch some Peppa. Her mouth looks funny because Reed just poked her tongue, like he does. Her eyelids are also extra puffy because they gave her fluids for the MRI, and it's just taking longer for those to settle. Gabriel also wanted to show me how his 'dinosaurs fight' over FaceTime, so I took some pictures <3 And he's gotten to know the particular way I say, "Ok, well..." at the end of my phone calls with Charlene, so now he interrupts it and yells, "Talk to mommy!" before we can end the call. So I got to watch him high five his dinosaurs for many extra minutes =) I don't have a video for tonight. . . .

*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************

Julia's official pages:

Website: juliaadamscancerfund.org

Facebook: Julia's Fight Against Rare Cancer - Fund

GoFundMe: gofundme.com/juliasfightagainstcancer


Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i 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



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© 2020 - all photos in blog copyright Amy Largent. Please do not use them without permission. Thank you. 

Meet Julia Adams
I'm 3 years old and I have a rare and serious form of childhood bone cancer. I'm doing my best to beat it, but my family needs your help!