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March 8, 2020

A stable, comfortable day.  Which is pretty much what we hope for right now.  Vitals are decent: heart rate 160s, BP 67/36.  No fevers.


A few people have commented on her stable blood pressure, and are confused as to why it's so good all of a sudden (when it was so bad two weeks ago).  I think I mentioned it, but she's on the max tolerable dose of epinephrine.  That is keeping her blood pressure stable, and elevating her heart rate.  They'd like to see 48 hours of stability before they start to wean it, but they haven't seen that yet.  Her blood pressure drops several times during the day - not to anything crazy like it did before, but 20 or so points under what they'd like.


So right now, the medication is giving us stability.  But prolonged use of vasopressors often have pretty significant consequences.  The goal is to treat the underlying condition before that happens, but I'm not sure we'll get there with Julia.  And let me Google that for the people who will ask: "Vasopressor - a group of medicines that contract (tighten) blood vessels and raise blood pressure. They're used to treat severely low blood pressure, especially in people who are critically ill. These drugs can help doctors treat patients who are in shock or are undergoing surgery."



She's had her eye open a bit today, but minimally (more so in angle of openness, rather than amount of time).  It's open, but only about 1/4 of the way.  She's committed to watching her soaps.


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Non-medical stuff.


I understand there is an elaborate gift of a large family portrait oil painting in the works.  The thought is kind and generous, but this isn't the right time for our family.  My sister politely asked the gift giver to not proceed, but I understand she intends to anyway.  So now I am personally asking her to not proceed. 


I feel this is appropriate as an open letter, because there may be something for others to learn here. 


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To the oil painting gift giver:  If you have collected any money from Julia's followers, please return it.  And please go no further with creating a digital composite or recruiting an artist.


While I believe your heart is in the right place, you've suggested you intend to put me in a very uncomfortable situation.  I will walk into an artist's studio, at some point after Julia passes, "when I'm ready", and decide whether or not I will accept their portrait of my family.  I can tell you right now: I would accept it.  Even if I didn't want it.  I would be unable to refuse, seeing the likeness of my deceased child, and knowing the time, talent, and money that went into creating it.  


It is situations like that were a gift becomes an obligation, possibly even a burden.


I know you have experienced loss yourself, but our circumstances are different.  There are very important visual decisions that must be made for something like this that I don't believe you've considered.  Or you expect my family to be in the proper head-space to make those decisions (we are not).


For example, in our large, heirloom, family portrait, would Julia be depicted with hair, or bald with no eyebrows or eyelashes?  Would her body be perfect, or would she have her scars and attachments?


Would giving her hair suggest we want her forever captured in her 'more beautiful' state?  Would it suggest she was indeed more beautiful before?  Would giving her hair and removing her trach - which has sustained her wonderful life this last year - be an insult to her brave fight?  Would it be saying her last year and a half has not been as valuable or as cherished as her first year and a half?  That her time while fighter cancer is worth less to her family.  Or... if we depict her with her medical devices, balding, and moon-faced from steroids... would we be forever submitting ourselves to the constant reminder of her struggle and death to her disease?  Is that what we want to see above our fireplace every day?  Is that how we want Gabriel to remember her? Is an obvious cancer child the focal point we want for all guests who enter our home?  


What about the future children we hope to have?  Would this painting be a constant reminder of our "before Julia" and "after Julia" life?  Would they feel alienated?


This oil painting, by your own words, is expected to cost thousands of dollars.  When losing a child to cancer, when their visual appearance changes so drastically, (and in our case, for half of her life, not just in her "final days"), these are decisions that we are forced to make.  And we're not ready to do that now, and likely not anytime soon.  Maybe ever. 


Something else to consider, is we would be unable to throw out or otherwise dispose of such an expensive work of art that depicts Julia.  When you lose a child, everything about them becomes the most precious thing ever.  The physical memories I have of Julia are not your typical 5th graders' math homework.  I can't toss them in the garbage and go about my day.  She will never color again.  She will never put another sticker on paper again.  She will never pick up a toy again.  She will never intentionally snuggle into a blanket again.  She will never smile for a picture again.  


Everything involving Julia is literal treasure to my family.  Every paper she's scribbled on.  Every plastic teacup she's touched.  Every pillow she's laid on.  Every stuffed animal she's hugged.


I am unable to get rid of anything.  I've kept everything personalized that has been sent by her online friends, as they demonstrate love for Julia.  It doesn't matter whether or not I like it, or how large it is.  I must keep it.  Because her time of creating new memories is at an end.


So far, most everything is able to fit in a few large memory chests I have bought for her.  So I have a safe place to keep things that may become too painful to have on display.


But I can't do that with a giant oil painting.  This would be forced upon us, to keep forever, even if she is depicted in a way that brings us sorrow rather than joy.


I acknowledge that in your own personal life, with your own losses, you had very few photos of your loved one, and an oil painting like this was a great source of comfort.  But that's not the case with us.  I'm an obsessive picture and video taker, and (thankfully) I have literally over ten thousands photos of Julia. And with photography in mind, we have also repeatedly turned down offers of professional family portraits in the hospital.  It's just not right for us. 


These are the reasons why I am asking you to not have a portrait like this created.  I appreciate the gesture, but we are just not ready to make the required decisions.  And I don't want the pressure of being expected to "be ready" at some point in the future. 


I would have appreciated you accepting my sisters very polite (and obvious) "no" the other day, rather than insisting you would just do it anyway through other means.


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We have received things we will cherish forever.  We now have a beautiful painting of baby Julia on our fireplace.  Diamond art, framed drawings from children, amazing sketches... our mantel is decorated with all stages of Julia's life.  Someone just ordered me a fingerprint necklace that I'm really looking for to.  Small.  Easy to put in a jewelry box if things get difficult.  We just can't accept anything this large and expensive, and... permanent. 

 

With that said, I am not trying to discourage anyone from being thoughtful and generous to families with sick children.  By all means, send them gifts.  Julia has received a lot due to the popularity of her story... but many sick children receive nothing at all.  They would love a handmade blanket, and a customized pillow with their name on it, and an extravagant birthday party, and a comic book hero likeness, and gifts to show their often-forgotten siblings that they are important too.  Please keep doing that.


But major gifts really need to be done extremely carefully.  With the full approval and cooperation from the family.  If the family says they aren't ready, don't force it on them just because it is something you personally value.


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Facebook detectives: no need to track down this person.  I'm sure the message has been received clearly this time <3 And if anyone wants my personal input... gift cards are the way to go.  And chocolate chip cookies.



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No video tonight.



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*********** ~~ Julia Adams ~~ ***********   

************* Official Links *************

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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.  A current summary can be found here: juliaadamscancerfund.org/summary







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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!