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January 15, 2019

No news it good news, right?

Julia's still hanging on.  She had another peaceful day.  Her stats remain about what they were yesterday, so no noticeable increase over the course of 24 hours.  Since people are curious, her heart rate fluctuates between 100-130, her ET is around 78 (lower than the other day when it had hovered around 82), and her blood pressure is usually 160s/100s.  Her meds are the same.  She did open her eye a few times today (yay!) and she even found both Reed and her cartoons twice.  The pic today is showing how much she can open it... it's not a lot, at all, but sometimes it's clearly intentional, and we are so happy for every movement we get out of her.  Other than the eye, she can just barely twitch her left toes once in a while.

We had a long talk with the PACT team today.  They are the palliative care doctors.  We expressed our... not concern exactly, but maybe confusion (also not the right word - brain isn't working) as to why she's still with us.  We were told last Sunday that she had days to live, a week at most.  Now that we're working on day nine, Reed and I of course have questions: what is the cancer doing; how has it not fully cut off her pathways; and if it's not advancing as quickly as expected, does that open up ANY options?

We reminded them we have been aggressively treating her with some alternative therapies, and we requested another MRI to see what's going on.  If the cancer is absolutely running rampant, then Reed and I might rethink what we're doing.  We don't want to just delay any sort of suffering.  But if the cancer has not grown nearly as fast as it had the week before, then we'd like the doctors to take a good look at what we're doing and come up with SOMETHING.  Have we cleared away enough swelling for chemo?  Is there ANY clinical trial, even for another cancer, that is now an option?

Nothing in her vitals or physical movement suggests that there has been an improvement, so we're solely going off of the fact that she's still with us.

Oh, and as a reminder on that - I've gotten a ton of comments and messages asking why she's not a candidate for these traditional treatments (surgery, chemo, radiation).  It's because of the swelling, which all of those options cause.  Normally, it is not life threatening if a tumor swells.  You would likely get some unpleasant pain symptoms, and if it's in your brain, maybe some weird side effects like blurry vision.  But her tumor is wrapped fully around her brain stem and is squeezing it (they can tell it's squeezing it because it's lighting up, indicating it's under pressure).  If they cause this to swell, as it would with any of these treatments, they are convinced it would lead to near instant death.  Their words were "she wouldn't even make it off the operating table".  Chemo causes cancer cell death (ideally), but before they die, they swell.  Same with re-introducing the infection: massive swelling is the body's defense.  So as far as they know, any treatment they're able to administer would kill her more quickly than the cancer, so their hands are tied.

Currently Reed and I are using CBD oil, another shall-not-be-named oil, and frankincense oil.  Tomorrow we are talking with the ER doctors about vitamin C infusions.  We're also bringing down a PEMF therapy mat.  None of these are ideal cancer treatments, but given my limited time to research, we have found seemingly credible success stories with each.  So we're throwing everything we can at her and just giving her the absolute best chance at life.  

Tomorrow we talk with the doctors about her MRI scan schedule.  So it sounds like they are honoring our wish for another look.  We get the impression it's just to humor us... but we'll take it.

And finally, so many of you message me saying you don't even know what to say, and you want to do more....  something...  I just want to let you know that what you're doing is enough.  Just being involved is enough.  Whether you write to me in sadness, hope, anger, or frustration, or to (sometimes guiltily) tell me that you're hugging your healthy kid more -  I am happy for the support, and I can relate to all those emotions.  So even though it feels inadequate, know that you taking time out of your every day, to just let us know that you're still thinking about Julia, is enough.

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