January 17, 2019
Julia's still here! I know we're all kind of holding our breath for the bad news day. Vitals: heart rate 120s, ET 77, BP 163/113. She's had another sleepy day. She's opened her eye a few times to find cartoons (she is DETERMINED to watch her cartoons!) Her face fluctuates with the puffiness throughout the day. She's on the MRI schedule for tomorrow at 5:00. We've started putting her on a PEMF mat as another alternative therapy... just something to do that worst case does nothing.
An ANGEL contacted me through Julia's Facebook page yesterday and said her 10 week old son was diagnosed with clival chordoma with metastases all throughout his body, was told there were no options, and put on hospice care. The parents were determined to give him a chance. Somehow they got him treated with just chemotherapy (no surgery or radiation). He's now FOUR, and living an active life with no evidence of relapse. Our ("new") oncologist said it was impossible to treat this cancer - especially with just chemo. And here is living proof that it CAN be done. She provided the exact meds that were used, and those were immediately given to our oncology team through several avenues. They are looking into them today, and it is our top priority to get opinions on them ASAP.
This woman lives in New Zealand. It is crazy to think that Julia's story has gotten shared so much that it literally reached halfway around the world, and now we finally have direction. Wow. I still appreciate it's a long shot (like super long), but this feeling of HOPE is something we haven't had in 11 days, and we'll take it. This is the result of you all sharing the story of a girl you don't know... it feels like you're not doing much, but SOMEONE'S share started the chain of events that ended with Julia's story in front of a woman who's seen the fight won. So please keep doing what you're doing.
For my birthday, so many people participated in the #storiesforjulia, and it was such an amazing surprise! Thank you to everyone who read a story - Julia will hear them all over and over =) And I still read your comments to her, though Julia is so popular now it's difficult to get to them all as soon as you write them! But it's my favorite thing to do to sit next to her and tell her what you're all saying <3
So hopefully some news tomorrow. We don't always get MRI results the same day, especially with her scan being so late, but I hope to have new info for my update. I guess we're hoping that the growth rate has slowed down from 'explosive' to something... anything, that is more manageable.
(And in an effort to save 10% of the comments - yes, St. Jude has been contacted.)