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February 20, 2019

Julia has slept most of the day.  Her counts are at 0 now, so she is the most tired she will be throughout her treatment cycle.  They said to just expect her to want to sleep the days away. Vitals are great: heart rate 130s, ET mid 40s, BP 110/65.  No medical concerns (fever/infection).  Nutrition changes are still in the works.  No word on when PT will start.  We'll be talking to the respiration team about how she's doing as far as vent assistance, and what the plan is with the trach (if there is any option to maybe cap it for part of the day to see how she does).  But that change will likely come as she regains strength.

The plan is an MRI once her counts get back to normal, and then a final round of this same chemo.  After that, they will re-evaluate her whole situation.  I honestly don't know if there is a plan after that (I mean, there will be, but I don't know if there is right now) - no one was expecting her to still be here.

I don't even know what to say about the progress Julia has made over this past week.  It doesn't seem real... but it is... we're witnessing it.  Just 2 days ago I shared a video of her moving her right hand the slightest bit.  This was 2 days after I first felt some twitching in her fingers, that couldn't even be verified visually.  They were the smallest muscle spasms.  She hadn't moved her hands in over a month, due to the tumor putting pressure on her brain stem and cutting off that functionality (supposedly forever).  

On top of her loss of mobility, there has been lots of concern about the damage done to her brain from the cancer and the stroke.  (She had a stroke back in December, caused by an infection that they believe entered her brain through one of the surgery locations.  One of those "rare complications" you sign a paper acknowledging can happen after any surgery.)  Once we got the bad news, we definitely had some really hard conversations.  If, against all odds, we managed to treat her cancer... what would be left of her?  Would she be a vegetable?  Would she have any quality of life?  Would she know who we were?  Would she talk?  Would she move?  None of the doctors were very encouraging as to what to expect should there be any reversal... cancer on the brain stem is just developmentally devastating.  

I hate to admit that the thoughts of, "Would it just be better if..." went through my mind.  A lot.  We did not want to selfishly hold on to a shell of our daughter.

Well last night around 3am Reed sent me a video.  I had to watch it over and over again just to be sure I wasn't seeing things that weren't there...  I swear I saw her mouth "mama" the other day, but she was very aggravated, and crying, and I couldn't be 100% positive it was intentional.  Well, there is NO QUESTION as to her intention in this video!  The lights are off and it's dark, but you can see it clear as day!   "Mama", "Dada", and "Baby"!  Her three favorite words to say!  We can't hear anything with the trach... but it's there!  You can even see her struggle a bit on the "B" for baby - she always emphasized it funny, so it must have seemed extra weird for her to not hear the "Buh" sound.  SHE'S EXHAUSTED, AND HALF ASLEEP, BUT SHE DID IT AND SHE DID IT PERFECTLY!  

I was so happy I could hardly contain myself, and then he sent ANOTHER video 5 minutes later.  SHE DID THE FINGER FAMILY SONG WITH HER HAND!  4 days ago she hadn't so much as twitched her fingers in over a month... then she started getting motion back in them, but we were afraid it was just random nerve movements... Last night it was the weakest, shakiest little finger family, but when asked for "daddy" she moves her thumb, and "mommy" she moves her pointer, and  "baby" she moves her pinky!  She heard a verbal request, understood it, and physically made her body respond to it!!! She is fighting SO HARD!  

You guys have no idea how much I've cried watching the video I posted on December 27th.  It was when she was 'regaining her strength' from complication after complication.  The plan was to finally start chemo and actually FIGHT THIS.  But then the bad news came.  She became totally unresponsive and we were just waiting for the end.  I "knew" that video I posted of her doing the finger family, that I was SO PROUD OF at the time, was the last time I'd ever see her move her fingers.  

And nearly 2 months later, 6 weeks after "the end", she did it again.  And it's the most perfect thing in the whole world.  

I don't even know what to do with this information. I mean, what's going on inside her brain... to this tumor... to allow her to regain control this rapidly?  It feels like it shouldn't be possible.  Any one of these improvements alone would be a miracle, but its back to back to back.  I can't help but be excited.  I'm SCARED to be excited.  I'm scared to start thinking she might actually come home again.  But what else am I supposed to think!?

YouTube Video for her non-Facebook friends:

. . . *********************************************  ************** 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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3 comentários

Wendy Lynn Nelson
Wendy Lynn Nelson
22 de fev. de 2019

Praise God! I'm in tears after watching that video. I only have one question now that I'm finally caught up. You always talk about Julia looking for Reed. Has she always been such a daddy's girl or is that more so since the hospital? Keep fighting baby girl! You have a special friend in Iowa praying for you & checking up on you everyday. I love you Julia! Reed & Amy please stay strong not only for Julia & Gabriel, but also for each other. I have seen childhood cancer tear couples apart. Please remember to care for yourselves as well. All my love.


wow. I have no words. So many prayers for sweet little Julia. Such a miracle !!


Tears as I read Julia’s (your family’s) update! Beautiful video. Praising God and praying again. You are not alone. Love and hope, Mary (old friend of Reed’s cousins)

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