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April 27, 2019

Julia slept pretty much the whole day.  Her heart rate has been elevated (getting up to the 180s), but they don't think she needs blood yet.  Looking at her history, it's been slightly elevated after chemo each time (she finished this round yesterday).  So they're keeping an eye on it.  She hasn't had any therapies today because it's the weekend.  So not much today!  She hated her bath, as usual. And then she got REALLY excited for Paw Patrol when it came on the TV (Reed got a video - in comments), and then she promptly fell asleep and that's how she's been! 


** Chemo 101 **

Many people have asked what I mean when I say Julia's counts are at zero.  While on some chemo, blood is drawn regularly to check for white blood cells, red blood cells, and platelets.  These can often get low due to the medication, and any of these being low can be a pretty big problem.  White blood cells are what fights infections (and when they're low, that's why chemo patients are at such a high risk - even a cold can be fatal).  Julia gets her temp taken constantly when her counts are low, and ANY concern is treated as an emergency.  Red blood cells carry oxygen everywhere.  This ability is measured by the amount of hemoglobin.  A low level here means you're anemic and your body has to work really hard to do normal things like breathing.  This is (one reason) chemo patients can be very weak and tired.  Her nurses look for rapid breathing / difficult breathing / and high heart rate to suggest there might be a low red cell count.  And finally platelets help your blood clot.  Bleeding can be a concern while on chemo - little cuts can bleed a lot, and internal bleeding can be a huge problem.  So the biggest concerns are infection, anemia, and bleeding.

When Julia starts a new round of chemo, which for her is 5 days, the medication goes to work attacking cancer (among other things), and her counts (of white cells, red cells, platelets) start to drop.  Shortly after the 5 days are over, her counts all hit 0 - she's at her most vulnerable.  Then with the help of blood transfusions, medications, and time, her counts slowly start to rise as her body re-stabilizes.  Once her counts are back up to normal, or close enough, they hit her system again.  This is what constitutes a "round" of chemo: get the medicine, counts drop, counts come back up.

Oh, and just because someone asked - chemo attacks rapidly multiplying cells (which is what cancer is!) but other rapidly growing cells are also your hair roots and your stomach lining.  That's why chemo patients are often bald and nauseous.  

... That's 100% of my knowledge on chemo - so hopefully you don't have any more advanced questions!

** Other Child Update **

Several days ago I mentioned a woman in Africa who contacted me about Julia's case.  Her daughter Mia is also fighting it.  Her oncologist is telling her that chemo isn't an option - that it never works for this cancer.  There are SEVERAL families that having a walking talking proof that chemo CAN work on Clival Chordoma.  But... for some reason, this stuff just doesn't get shared.  So through the power of social media, this family found my family =) I just mentioned her in passing, but several people asked for a link to follow.  Most of her updates have been in Afrikaans, but she will be updating in English as well from now on.  So if you'd like to follow her story, here's the link to her precious Mia:


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

Julia's *only* pages:  Website: Facebook: Julia's Fight Against Rare Cancer - Fund GoFundMe:

Julia's *only* fundraisers:  T-shirts: Children's Book: 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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