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January 6, 2019


(the news isn't any better, just some details) Updating to Amy's account with her permission.  I've been helping Amy keep tabs on all the messages and friend requests since her latest, devastating update.  Thank you everyone who has messaged - they're getting read.  Prayers are requested.  Survival will take nothing less than a miracle now. Lots of people are new to the story and I see lots of questions in the comments.  Julia was taken to the ER the day before Halloween with a persistent stiff neck, other than that, she appeared to be a normal, happy, healthy 22 month old.  A mass was immediately discovered, but it took several weeks to determine what it was.  The day after Amy's father died to cancer (melanoma), Julia was diagnosed.  The diagnosis changed a few weeks in from ATRT to Clival Chordoma.  This cancer is so rare, the leading doctor in the world has only treated 8 children.  They just simply have no experience fighting this.  Since being admitted in November, Julia has undergone many operations, and just got out of her halo neck brace 2 days ago.  Julia had developed a bacterial infection in her brain shortly after her tumor removal surgery.  It is being theorized that this infection "ate" the cancer, as has been demonstrated in just one or two case studies over the past hundred years.  Now that the infection has been fought off, it's possible the cancer has been able to grow unchecked.  They were expecting to do several rounds of aggressive chemo, and then 1.5 months of radiation, and then another year of chemo.  There was a plan to treat this... no one expected to be told she had just days to live.  With the constant complications she faced, she didn't even get to try. Details from today:

They did this MRI because Julia stopped moving her right arm, which was unusual. The doctors are stunned by how fast the tumor has grown in less than a week.  No one expected this at all.

The tumor is now taking up nearly 100% of the available space in the spinal column - this is why she's being given only a few days to live.  Very soon it will cut off her ability to breathe / get blood flow to the brain.

Because the space is already fully gone, *any* swelling will kill her - such as swelling from surgery, radiation, or chemo.

Her entire team of specialists had a several-hours long meeting this morning to discuss all possible options, including clinical trials, and they came up with nothing.  There were lots of tears.  None of her doctors are OK with this outcome.

Julia is being kept 100% comfortable.  They are being very liberal with her pain relief, and she is currently showing no signs of discomfort.

Amy has received lots of messages about CBD oil.  They have let their team know that they wish to give this a shot, so the conversations have started and of course everyone knows the urgency.  There is red tape though, so they're working through it.  It's a long shot, but the alternative is doing nothing.  ** If you have any information on the dosage of CBD oil for tumor fighting, please message Amy - they are getting read.  We have tons of articles on why to use it; just looking for dosage/strand info ** --- My own update: Many people are asking how they can help.  There was a GoFundMe setup a month ago when Julia was first diagnosed, this is the BEST way to help.  If you haven't donated, and are in the position to, now is the time.  Amy and Reed will be returning from the hospital to a shattered world... paying bills while they are grieving and missing work should not be on their mind.  I know that Amy has a stack of Julia's medical bills that she hasn't even opened yet.  There is so little we can do to offer comfort, but this is something.  Please donate, please share, and please keep praying.  We will update again tomorrow.

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