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January 11, 2019

Julia remains sleeping comfortably. She's woken up several times today, opening that one eye just for a few seconds. She's even been a real fighter and searched out her cartoons with that one eye! She can't stay awake to watch them more than a minute or two, but we believe she can hear the songs. We also received a care package from one of Julia's new friends with some hair bows and nail polish, so her aunt and cousin gave her a nice spa day and did her up all pretty =)

Medically, some of her stats are all over the place "due to the progression of the disease". Her heart rate can jump around alarmingly once in a while. Her lungs are struggling more to push out the CO2, which we're told is a normal part of coming off the vent after so long (your lungs need to rebuild their strength), we of course just don't know if the "rebuilding strength" part will happen. If it gets to a point where anyone believes she's uncomfortable breathing, she'll go back on some assistance. The stat we're most unhappy with right now is her blood pressure. It continues to climb. And we're told... it's expected. They do have her on a blood pressure medication but it's not working as effectively anymore, again "due to progression of disease". She's on the same concoction of meds - all very low doses, mostly to control "possible" symptoms as well as to continue to avoid any withdrawal. The morphine is at the lowest setting, and someone has only felt the need to hit the button for a boost once or twice - but we're not sure if her discomfort was from pain or agitation. We just can't tell anymore, so we're erring on the side of comfort.

The doctor explained that where the tumor is, and the sort of swelling it's causing, Julia is likely feeling nothing and is aware of very little. (And I know cancer can cause LOTS of pain, so we're counting this as the blessing it is.) The doctor is pretty confident he could remove her from all meds and she'd be pain-free. But just for that 0.1% chance that's not accurate, we're being safe. Not having her in pain is all of our top priority right now, especially because she can't communicate.

Reed and I continue to administer what we have, adding an essential oil that was delivered to us. It's all we have to cling to, so that's what we're doing. We have looked into almost every treatment / alternative therapy suggestion we've received; some I've explained why they've been ruled out (chemo, radiation, surgery, etc.), some others would require her being transported and she's just too fragile, others have no success on her particular cancer. But the ones we've found have any merit at all, we're doing.

While I've been sitting next to her bed, I've looked through all of her old videos. I decided to put a compilation video together, to celebrate her life, which she is still living(!) It goes month by month and they're short clips; some of our favorite videos of Julia =) I'd love for you to watch it - to see the beautiful life that people from all over the world are praying for. She is such a wonderful girl, and just 3 months ago she was happy, vibrant, giggly and sweet...

**Note: Near the end, there is a sweet video of her hugging her brother in the hospital, just before her surgery - you can't miss it. If you'd prefer to end on that happy note, just stop the video there. Past that, there are just a few of the short clips I've shared on my Facebook page. So they've been shared before, but it is sad to see her health decline so rapidly after watching a happy and healthy little girl. ... the realities of childhood cancer I guess.**


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Dear ones,

Reed’s cousin Sarah sent us your story so we could join the thousands who are praying for your family. We’ve known Sarah’s family since we all lived in Philadelphia together. She and my daughter Rachel have stayed connected. Though you wouldn’t remember us, we’d met you Reed at a couple of family events when you were a kid.

Thank you for taking the time and energy to share Julia and your family with us. All those who have commented on her being smart and strong are right. I love the video and even after surgery she was determined meet the challenge of answering you!! What an amazing girl!

This is so hard and as a parent we c…

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