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March 6, 2019

All the teams looked at Julia's MRIs and we have more information: There is officially NO BAD NEWS!! 

The MRI was of her whole brain and spine.  No one is concerned that anything has grown or spread.  This includes her original / possibly only tumor (around her brain stem), and the 'concerning mass' further down her spine.  In January, they were concerned the cancer had metastasized there, as it's known to do.  This was not confirmed at the time due to her situation, and it's not being confirmed now due to being on chemo / not wanting to risk a biopsy.  So no one knows 100% what's on her spine, if anything.  But whatever it is has not grown or spread since January's image.  (I will note that they did NOT do a full-body CT scan to check for possible mets in other organs, but this honestly hasn't even been brought up as a possibility.  Perhaps with her cancer, and how it's presenting, it's just not a concern right now.  It's only even on my mind because of my experience with my dad's cancer, but I know melanoma is a whole different beast.  I will ask about this though.)

Anyway.  So they saw absolutely no evidence of growth, but the imaging did NOT show measurable reduction.  Which of course was kind of a bummer to hear.  But they explained that Julia will forever get a crappy MRI because of her new spine hardware.  Apparently they can't (ever) use the 'good' machine.  So because of this, there are imaging restrictions.  They explained that sometimes it can be as extreme as not being able to detect anything less than a 20% reduction in tumor size - meaning anything less would just look the same as before, due to the crappy image quality.  So when they suspect that might be the case, they take into consideration the clinical presentation of the patient.  In Julia's case, every specialist working with her agrees 100% that she is improving.  So they believe that given her physical condition (namely the constant, and very obvious, 'regaining' of lost abilities), they DO believe the cancer is continuing to shrink, despite not seeing anything measurable.

It's also possible that the cancer is being killed 'from the inside out', so, like the part directly squeezing her brain stem might be dying first (releasing pressure and allowing her to regain functionality), but that would not be super evident on an MRI, since the shell of the cancer would look the same, especially on a low-res image.

They also said they generally do an MRI every 3 months, and even then, they expect JUST a measurable change.  Because of Julia's serious condition, she's getting them roughly every month, so not seeing a measurable reduction in just a single month's time is not necessarily bad.  (As reference though, in January they saw MASSIVE growth in a 6 day span!  To Reed's eyes, the cancer appeared to have QUADRUPLED in less than a week, and possibly spread down her spine -- it was growing out of control).  They said that if we compared yesterdays MRI to the MRI from January, there IS noticeable reduction.   And they expect once we compare next month's MRI to January's, there will be even more noticeable reduction -- it's just not super evident (or measurable) from month to month.

So after explanation, I feel less bad about not getting 'fantastic' news.  

I mean, this is fantastic.  I'm not going to downplay that.

I MEAN(!!!)


Two months ago she had DAYS TO LIVE, with cancer growing at an explosive rate, losing responsiveness by the day!  And now every team member is HAPPY with the direction and OPTIMISTIC about her chances.  This is nothing short of a miracle turn-around.  

OK.  Just needed to reset reality there.  I don't know what I was saying... suggesting this wasn't the best news ever.  (I want to just delete the last few paragraphs and start over, because I'm being crazy, but it's already 11:20).  So... just confirming that I understand this is AWESOME NEWS!!!

They are currently happy with the treatment, and they like how she is responding.  At the time, additional surgery and/or radiation is not on the table (and I'm TOTALLY good with that).  I appreciate everything we have to offer for cancer treatment, but omgosh I'm tired of people cutting into her!  And I'm honestly terrified of radiation on the brain stem... so putting that off forever is just perfect.

AND Reed said they want to start trach care immediately.  They said (with absolutely no guarantees, of course), that if Julia continues to progress as she has, they believe she could be looking at coming home in TWO MONTHS!  

GUYS.  I literally planned her funeral.  I signed paperwork with "Julia Adams" listed as 'Name of deceased'.  I have an online shopping cart somewhere with her memorial statue sitting in it.  We did a 'final' professional photo session.  We got molds of her hands made.  I even contacted my township to understand private land burial laws...

And now we're being told she will be coming home someday.  Soon. ...Alive.

My brain is so fried, I don't even know what's going on anymore.  I'm starting to like, second guess my memory.  Like that January didn't even really happen or something.  If I didn't have everything in writing... something I could go look at, it would be so easy to convince myself that it was just a nightmare.  

I mean, I know we're not over this by a long shot.  And who knows what her future looks like.  But...

I don't know.

I don't even know how to end this.

It's 11:30 and you're all going to think something bad happened, so I'm just posting now.  Hopefully I can use my brain again tomorrow!

(Pic is of Julia being held by Reed while they watch TV together on his laptop!  This hasn't happened in 4 months! Content baby!)

. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************

Julia's *only* website: Julia's *only" Facebook page: Julia's *only* GoFundMe: Julia's *only* official fundraisers:  T-shirts - | Jewelry: Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

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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Erin McGahuey
Erin McGahuey
Mar 07, 2019

OMGosh! Such exciting news I want to jump and shout for joy! I will have to be content loving on my littles that I care for. Julia is truly a miracle in the making! Love, hugs, and prayers from the frozen prairie of North Dakota. 😍😍🤗🤗🙏🙏💜💜☃️☃️❄❄


Hello, praising God for this news! I’m thankful that you didn’t delete any of your paragraphs. We want to know about you guys as well as Julia. Of course words can only give us part of where you’re at in that moment but it helps us join you. I hope you were able to settle down and get some rest. I’m praying again this for you all. You are not alone. Mary (old philly friends of Reed’s cousins)

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