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January 26, 2019

We're exactly 3 weeks past the MRI that prompted the doctors to tell us she had days to live.  She gets her final dose of chemo in about 20 minutes.


Her heart rate is in the 150s today, and can get as high as 170s if she's bothered.  The doctors say the higher heart rate is likely indicative of an issue with her blood (low counts) that is kind of expected with the chemo.  She will likely need a transfusion soon, which we were told about when we signed consent.  An extra dose of Morphine or Ativan doesn't seem to bring the heart rate down, so they don't believe it's pain related.  ET has been in 60s all day which continues to be really good!  Her latest BP was 124/70 - fantastic.  The new BP medicine is continuing to work.


The not great news is her left eye is almost completely unresponsive to light now.  1.5 weeks ago it still functioned correctly, she just had a hard time keeping it open because she was so sleepy.  But it has slowly become less and less responsive to their flashlight checks.  Right now it's barely reacting at all.  That's (likely) a sign that the cancer is progressing, but that's probably as expected. I do not believe the chemo is expected to ever act this quickly, as in a response in days.  So... I guess at this point we're hoping that our alternative treatments continue to really slow down the growth, until chemo can kick in and start destroying stuff.  And of course we hope no permanent damage is being done to vision, or any other part of her.


We wanted to thank you all for your continued comments.  Two very helpful ones recently have really improved her situation.  Reed and I just simply don't know what to ask for... and we're kind of at the doctors mercy when it comes to day-to-day.  Yesterday, a physical therapist (I believe) had a ton of great recommendations as far as Julia's legs and how they are positioned for comfort care vs hopefully walking again.  We showed that to the team and today I've seen Julia's legs out straight several times; and PT and OT are officially back on the schedule starting Monday!  And Julia's breathing continues to look much better, and is likely much more comfortable, thanks to the machines recommended by a respiration therapist on another post.  We're at a fantastic hospital, but Julia has so many specialists on her team, and she was officially put on hospice, and then kind of taken back off it at our insistence... I think things are just not going by the book at all, so we really appreciate all these recommendations.  


I think the swelling is down some in her face?  Her eyelids are super puffy still, but her mouth/nose doesn't look quite as distorted.  She was given something at some point to try to bring down some swelling, but no one is concerned.  They say it's likely the chemo and all the extra fluids.


And tonight I have to share this WONDERFUL video put together for Julia... You just need to see it to feel the love  <3


Original Post :https://www.facebook.com/sarah.brown.35977897/posts/10156927682457801

Video Link (if you can't see the post above): https://bit.ly/2FRrRzF




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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!