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January 22, 2019

First day of chemo today.  The first dose was around 6pm.  They went in through the port in her chest that they had put in two months ago.  I guess the treatment is 3 different medications, 4 hours apart, and that makes up one daily dose.  Within 45 minutes of the first medicine, she spiked a 107 fever.  Tylenol immediately brought it down to 99.  They watch for these things, but it's still terrifying.  [Edit: Reed misheard. It was a 100.7 fever! BIG DIFFERENCE!!] Her body knows what we're putting in it is bad... but it's better than the cancer that's killing her =(  If we had any leeway, we'd hold off on such aggressive chemo.  But with the pressure on her brain stem, her brain could stop telling her body to breathe at any minute. 


Vitals at last check: Heart rate 137 (hovering in the 140s today); ET 80; Blood Pressure 150/112.  She had her full labs done, and the doctor believes the ET is reporting higher than it actually is (he explained this could be due to some part of her trach circulating extra CO2).  He said her blood work is not presenting the issues that they would normally expect from someone having such a high ET for so long - she's still fully oxygenated and her blood PH is normal.


They stopped her sedation medication, and added an IV of Ativan to help keep her calm and relaxed.  She's also now on extra fluids and optimal nutrients for chemo. 


Really no alertness out of her today.  She's barely opened her eyes any (her face is super puffy), though she got some cartoons just in case she was listening.  She showed a little agitation during her trach/collar care, but that's about it.  Her alternative treatment continues around the clock, and we're looking at adding a few new ones - we just need to make sure there are no known major interactions with anything she's already on.  


I guess that's it.  We'll know how she reacts to the full chemo treatment by tomorrow... hopefully the one-time crazy fever is the only alarming side effect.




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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!