April 25, 2019

(Longer update - MRI stuff.  No bad news, just info)  ‍‍‍‍‍‍ ‍‍

Day 4 (of 5) of chemo, and Julia's slept pretty much all day.  She's just so tired.  Even when she's awake, it's barely.  Vitals are fine.  A few small barfs, but mostly mucus still.  ‍‍‍‍‍‍ ‍‍ She was too tired for any therapies today.  They're going to look at putting her left hand splint back on (no one is sure why they stopped putting the braces on - possibly because she was moving around a lot), but we've noticed her left thumb is constantly turned into her palm, like she's making a fist.  So they just want to get that loosened up while she's not using it too much.  Other than that, they're very happy with her physical progress.  They commented on the strength she has while they were doing a trach change - she fights them the whole way now.  Lots of fun.  ‍‍‍‍‍‍ ‍‍

Barely any play time today.  She watched a few cartoons, but just so tired.  She's really enjoying playing catch with her animals, which is great =) With her right arm, she can throw them maybe a foot.  She can't catch them, but she thinks it's funny when they land on her, so I guess that's good.  And I caught her sleeping holding Big Peppa's hand... so sweet <3   ‍‍‍‍‍‍ ‍‍

***  ‍‍‍‍‍‍ ‍‍

I met with the neuro-oncologist for quite a bit today to go over her MRIs.  Outside of hospice, I haven't gotten to speak with her much since she's on during the day.  A few random notes that I took away:   ‍‍‍‍‍‍ ‍‍

• Julia is responding "exceptionally well" to chemo.  (I have no idea if they're aware of the alternative therapies we're doing, and I didn't ask.)  ‍‍‍‍‍‍ ‍‍

• Lots of parties are "very interested" in Julia's weekly progress - given the remarkable turnaround, and the extremely rare cancer.  Apparently many different teams, even ones that we never hear from, sit on her reviews to get updates.  ‍‍‍‍‍‍ ‍‍

• She is "thrilled" that they were wrong (about there being no available treatment).  And she was genuinely happy!  I know egos can be quite a hurdle sometime in the medical field, but I really didn't get that impression at all. This doctor (and Julia's whole time) is amazing.  ‍‍‍‍‍‍ ‍‍

• I found out that my dad's radiation oncologist is very involved in Julia's updates.  As far as I know, he's more of an adult doctor at Penn across the street.  I had called him for a second opinion shortly after she was diagnosed (and had to give the news of my dads passing) - he was shocked at Julia's diagnosis, saying it's just extremely rare - almost unheard of in a child.  I thought that was the extent of his involvement.  But I just found out he's remained involved from the radiation side, and I guess is looking to be the treating doctor should radiation ever be an option.  We don't know if we'd go that route, but for some reason it really made me happy knowing he's taken an interest in her, especially when I don't think she's his typical patient.  My dad really spoke highly of him.  ‍‍‍‍‍‍ ‍‍

• I found out that there is no great way for oncologists to share 'success stories'.  It was talked about because I mentioned this family in Africa fighting the same disease... how can her oncologist get info from our oncologist that this can work (other than a personal phone call obviously).  Julia's whole case will need to be written up in a case report, and published, which could take YEARS!  So there's no quick way to share the news that she is another apparent responder to this chemo... which is really sad for other people getting this diagnosis now.  I feel like this field isn't taking advantage of it being 2019.  If Kim Kardashian can balance a wine glass on her ass and half the world knows about it the next day... why does it take years to make life-saving information readily available?  ‍‍‍‍‍‍

‍‍ • And on that note, apparently our oncologist really had to do some digging to find success stories.  She had to make phone calls, ask questions about dosage, length of time, alternating chemos, etc.  This info is just not like... sitting in a place ready for whomever needs it.  Crazy.  And they said the cases they looked at took 12-17 rounds of chemo.  Everyone is different, so who knows what Julia will need, but that's a ballpark.  ‍‍‍‍‍‍ ‍‍

• Possibly most interesting, I confirmed that this is NOT a brain cancer.  I will have to change some of the info I have out there.  We were initially told this was a brain tumor, and ATRT (the cancer she was first diagnosed with) is a brain cancer.  But this is a bone / cartilage / skull base cancer.  So technically a bone cancer.  It just often permeates into the brain.  Sort of like my dad didn't have brain cancer, even though the tumors were in his brain - he had melanoma that metastasized there.  This information doesn't change anything (obviously they've known it was a bone cancer). Treatment is still the same, and prognosis is still poor - though looking up for Julia <3   ‍‍‍‍‍‍ ‍‍

• And the doctor gave me some feedback on a comment I made: When Julia was given days to live, and we signed all the DNR documents, I asked if we could donate her brain to science.  Obviously we wanted to give anything to help other kids beat this in the future.  (I mean... who doesn't want to take every part of their child home in this situation?  But if previous kids' brains had been donated after they no longer needed them... could there have been a cure for Julia?  That was my thinking at the time.)  Anyway, there is a time limit on collection, so they prepared the paperwork for us to sign immediately.  Hand-written above "Name of deceased" was "Julia Adams".  And OMG I just totally bawled typing that.  Wow.  The emotion came back hard.  So I had to sign a paper, listing my daughter as "the deceased" while she was still laying next to me alive.  It might have been the worst moment of my life.  A few days later, I commented to everyone that they should reconsider how that is done.  I realize all information should be on any document you sign (so you know what you're signing)... but man, that was rough.  I asked them to consider NOT writing their child's name ahead of time.  Anyway, apparently she had taken that feedback to the committee, and they said they had never thought of how that procedure would make a parent feel in the moment.  Right - they just filled it out like they do all forms.  (And most parents who sign that document, end up losing their child shortly after... so who has the wherewithal to give that awful moment anymore thought?)  So it just was never brought to their attention.  Apparently they are going to look into changing how they do that.  Small consolation, considering what's being signed.  But I really appreciated that they took the feedback to heart.   ‍‍‍‍‍‍ ‍‍ I think that's it for random notes from the meeting.  ‍‍‍‍‍‍

‍‍ ***  ‍‍‍‍‍‍ ‍‍

So her doctor spent quite a while reviewing some of her MRIs.  I'm REALLY GLAD I looked at these images!  (And I'm even more glad I didn't look at them before!)  Recently, we've been told there is "some" change, and "small" improvement... ...but you can REALLY SEE IT!!  Wow.  And even this doctor mentioned that Julia's response may have been unintentionally down-played.  She is VISIBLY responding to treatment.  And WOW her brain stem was... in really really really bad shape when we were told she had days to live.  I 100% see why they came to that conclusion.  Any second her vital functions could have stopped.  It was just being compressed to almost nothing.  ‍‍‍‍‍‍ ‍‍

I tried to put info in images, but it was just too difficult.  So I recorded myself talking about her MRIs.  We just compared January 5th's imagine to March 5th's.  So that video is in the comments.  I'm not even going to try writing it out here, because it would be super confusing.  Hopefully the video is easy enough to understand.  (Happy to answer any questions with my limited knowledge.)

YouTube: https://youtu.be/LfkHiWUseE4

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