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January 23, 2019

Day 2 of chemo. 2.5 weeks past the awful news of "days to live". Her heart rate has been in the 140s today and rises noticeably as her Ativan runs out. They're keeping an eye on possible agitation and discomfort and will adjust accordingly. ET is reporting 79 (Google ETCO2 if you're not familiar with this stat). Blood pressure is 133/84, which is REALLY GOOD! Her BP had been steadily climbing over the past two weeks and most recently hovered around 175/125. So it's great to see her new medication having an effect - we're really hoping it stays that way! The doctors were afraid the pressure on the brain stem was preventing anything from working.

The biggest change today is she's noticeably puffy. Like... really puffy. There is definitely swelling going on in her head from the cancer, but she was also given 5 bags of fluid today (I guess that's part of the chemo regimen). I've seen her puff up a lot from the fluids after her surgeries, but it's hard when you don't know if it's from retention or pressure. It's likely from both. In addition, she started holding her urine, so they took care of that and said we might start seeing some reduction in swelling. They're not sure what caused this new problem... possibly the cancer. With a tumor on the brain stem, any and all body "shut down" issues are on the table.

She's very sleepy; really no alertness today. We think she's comfortable. Her body is working so hard to fight this. Other than that, nothing crazy yet. Three more days of IV chemo and then we wait...

I also have to share this coloring page one of Julia's new friends made for her! They incorporated her medical equipment into her armor: her hand and feet braces, her neck brace, her IV... and of course her trusty tiger is by her side as he's been this whole time! They even got her "I'm a Warrior" tagline in there. IT'S PERFECT! If you have children, I would love for them to color it! Send a picture and I'll print it, or if you want to send the original, I would LOVE to have them. I'll decorate her whole room with Warrior Julia colored by your kids! [Phillip and Michael <3 ]

++++ Adding to Amy's update above ++++

We (a few of Amy's friends) help her with comments/messages. Just to answer a few common ones here where it's easiest:

-- If you're new to Julia's story and want to read from the beginning, or if you're looking for an address to send a card (or anything), or if you want info on how to help, we have all of that here:

-- Julia's cancer is Clival Chordoma, initially misdiagnosed as AT/RT. It's one of the rarest cancers in the world, and practically unheard of in children. Julia's only symptom was a stiff neck. Julia is not eligible for St. Jude. The world's most experienced chordoma doctor has been involved in her case.

-- And unfortunately spammers and some less-than-supportive folks have found Amy's page. If you come across any spam or insensitive comments, please comment on those yourself. We get special notifications for comments-to-comments, and we can properly block/delete.

Thank you so much for your continued investment in this little girl!

~~ We love you Julia and we're so proud of how strong you are! ~~

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I keep up on your posts of the little warrior i printed some of the coloring page what is your address to mail them and some things to you. 💜💙👼


Sarah Haney
Sarah Haney
Jan 25, 2019

Reed and Amy,

I’ve been following your blog for the last few weeks. Scott and I have been praying for a miracle for your precious little girl since we found out that she has cancer. Also praying for strength for you guys as you have been on this difficult journey – and so sorry for the loss of your Dad and sweet kitty cat. Love to you all. Your cousin, Sarah <3

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