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February 3, 2020

Still hanging in there. Vitals are holding steady. Blood pressure is where it's been all day: 80s/50s. That's really the only vital anyone is interested in right now. They've increased the rate of drain again today, and so far no major medication intervention has been needed. They were draining at a rate of 100ml every 2 hours, the last few days it's been 150ml every 2 hours, today it's 175. Still no improvement in urine output, but I understand this abdominal drain 'kind of' does the same function. Not peeing is still not good at all, but she's in a slightly better position than someone without the drain. But we definitely want to see some improvement there soon. Everyone is really hoping getting the pressure off her abdomen is all her kidneys need to start working again. No fevers in a while. She got some blood and platelets today. (Reminder to give blood if you're able! Cancer patients like Julia need it all the time <3) And those counts being affected is a known side effect of this chemo, at this stage in the cycle, so no surprises there. And you can see some redness on her left shoulder - that's from the stickers and leads. Her skin is just extra sensitive all over. Well 'sensitive' might be the wrong word. It's just not recovering as quickly. Wound care was in to look at the bedsore on the back of her head. They say it continues to heal, just slowly. She does have that new pillow now to keep pressure off, but it's not perfect given her limited positioning options. The NP believes her hands, arms, and legs, in general, are looking less swollen. Reed texted in the middle of the night and said it feels more like he's holding 'goof-goof''s hand again, rather than a balloon. And limb temperature has been decent: arms pretty room temp, legs a bit chilly, but not ice cubes. Other than medical stuff, she's had a rather awake day. Lots of eye movement (in between staring), intentional eye contact, minor tracking around the room, and definite mouth movement. It mostly looks like she's just mouthing 'dada' like she usually does, but who knows what she's actually trying to say. Just alert in general, which is better than the alternative. ~~~~ Gabriel is doing OK. I think his finger looks pretty bad, but I know it's just heat blisters and healing skin... and it's no secret I have an issue looking at that sort of thing. But he's starting to use his hand to grab things and play, so it can't be bothering him TOO badly. I also just signed him up for little-guy swim school. Aunt Charlene will take him once a week. I think it starts next week and I'll definitely get pictures to share <3 ~~~~ And as a reminder, my sister (who moderates Julia's pages) is currently working off of a zero tolerance policy for 'let her die' comments. This includes comments that fluff up the sentiment with 'you're doing a great job' and 'God please take her' and 'this is showing the ultimate form of love'. The end message is the same and I don't want to read it. So she's just deleting the comments and blocking the user from both pages. I can tell you that any thought anyone has had, has already gone through my mind. Likely obsessively. Suffering. Unfair. Failing body. Quality of life. Possibility of normal life. Long-term consequences of treatment. You telling me your thoughts adds nothing to my decision making. Which you must know, if you've followed me, because I've made our stance very clear. So you're really just saying it to "get it off your chest" and make yourself feel better. And finding some sort of personal satisfaction for having suggested a toddler needs to die is super fucked up. Please never follow another cancer child again. And seriously question your decision to interact with other people. Perhaps dogs are more your speed. Assuming they aren't sick. Also, please remember, none of us owe anyone anything. We are not a business. We don't have customer service hours. I try to respond to people, but if I don't, I don't. My whole family already had full lives, before adding on a full-time sick kid and a part-time social media commitment. Example conversation in comments (user has since been blocked). Laura suggested I black out her name, so I did, but I'm pretty over not bringing stuff like this to light. And the vast majority of you guys are awesome That's why I do this, despite how much it sucks to read I should pull the plug. Call out stupidity when you see it. Hopefully the next cancer mom will deal with less thanks to everyone's efforts <3 . Video (and screenshot) in comments <3


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

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund


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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Sending love and light and peace and comfort to you all... Sending love and healing and blessings to your beautiful Warrior Princess Julia... think of you all constantly and pray for you all daily... have been trying to get our kids to colour in the Julia Warrior girl pics, they are getting there, will scan them to you when they are done.. the kids keep asking me what colour Julia likes, and if she is getting better.... hard to explain to them (Jethro 5 and Ruby 3) the whole situation... they include her in their prayers at dinner time too.... Amy, i take my hat off to you and Reed , cannot believe some people can be so "unconsc…

Lik

Sheli Novak, God bless you and your medically fragile child, just as I ask Him to bless Julia and her family. The Word tells us to speak LIFE just as you are doing. Thank you and bless you and I pray for your situation as well.


Amy, I will never be able to understand the people who are telling you to "let her go" and such drivel. That is, unless they are childless and have no grasp of how far we would go to help our children, save our children. I'm sorry that keeps happening - and amazed they think you need their advice about your child's length of life.


I still believe there will be an amazing turnaround, just…


Lik

sheli novak
sheli novak
04. feb. 2020

i am still believing in Julia! I’m a momma to a medically complex 5 year old. To say no one gets the enormity of all of it is an understatement , especially hospital life. I’m including your amazing family in “medical family” because they are not only an army of love but pillars of strength.....you have an amazing support system. They get it.. all of it. You are blessed to have such a capable group of “ bodyguards”. The power of life and death are in our words... they can heal, bring hope, give strength, add humor and whisper encouragement to the tiny dark places in our heart but they can also bring destruction , pain and despair ... d…

Lik
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