Well, we know that overall Julia is not doing super amazing right now, but today is a day to celebrate. Exactly one year ago we were told Julia had only days to live. The rapidly growing tumor had taken up all available space in her spinal column, compressing her brain stem to nothing, and putting her into coma. We were told any swelling, like due to surgery, chemo, or radiation, would kill her. We were given no options and she was put on hospice. I posted that she desperately needed prayers, and within a few hours, her story had reached around the world. We immediately started alternative therapies. I still have no idea what role, if any, these treatments played and maybe continue to play, but we do know that the rapid growth stopped. And she stabilized. And her story reached a family in New Zealand who had living proof, in a four year old boy, that even if things look bad, this exact cancer can be turned around with chemo. They gave us their protocol and we pushed for treatment. Everything that has happened since, is here on Julia's blog. She came out of coma, with no neurological defects, and made physical progress by the day. She handled intense chemo like a champ, sometimes not even breaking eye contact with Peppa while mid-barf. She went on to enjoy six months of more daddy-daughter than some kids get in a lifetime. We saw her smile again, we saw both of her beautiful eyes open again, we hugged her again, we played with her again, we watched her love her little brother again. We've had a year of what most families who are given a terminal diagnosis never get: more time. Quality time. Full of hope. ~~~~ Things haven't turned out the way we've all wanted. The cancer starting growing out of control as soon as chemo was stopped. Today, has not been a great day for her. I think she's doing pretty bad; Reed doesn't seem as concerned. I'm very worried about the amount of swelling in her belly. It has more than doubled in size since my last update on it. I find it so difficult to look at, that I won't even include a picture, and I've shared pretty much everything. They've inserted a foley catheter with probe, which takes care of her urine problem, but also helps measure the pressure in her abdomen. The doctor today confirmed my suspicion: were she not on the vent, the pressure on her lungs would have already killed her. The good news(?) is that it is unanimous with every team that no one believes she's in pain. They all agree her symptoms are painful, but no one believes she is perceiving them. She does appear very comfortable, and I do agree she can still show pain through grimacing. But upon request, they started her on Morphine around the clock, just in case. I found her state today to be so alarming that I also asked how quickly they could "make her feel nothing" should something catastrophic happen. They said very quickly. She did open her eye twice today, and wiggled her foot when Reed was talking to her. He poked at her tongue and she did a very weak smile. No one has given us a timeline, but, while we keep her as comfortable as possible, I think Julia has just been holding out to show us she could make it to a year. But maybe her benchmark is the "1 week to live" they gave her, which would actually be next Monday. She is stubborn like her mom. ~~~~ So, not the best 1-year anniversary update. But as an anniversary present, I would like something from you guys. If following along with Julia, whether it's been weeks, months, or years, has changed your life for the better, please tell me about it. And it can be anything. Finding God, your young kids praying for the first time, choosing to go into a medical field, choosing to work with kids, donating to childhood cancer research in her name, hugging your kids more, spending more family time together, advocating for yourself or a loved one better, handling your own medical issues with more courage, having your teenage son show that he cares about someone besides himself... simply enjoying life more. Anything at all, even if it's silly. Short or long. I have all of my posts recorded, obviously, but they are more like facts. I want to honor her legacy. I want to put a huge album together, filled with her smiling face, surrounded with all your words of how knowing Julia has changed your lives. Someday when Gabriel looks through this book, or even Reed (who has no idea what we do here on Facebook), or perhaps any future siblings, I want them to see the beautiful impact Julia's life had on people. So comment or message me, and if you remember messaging me a similar story before (I know there are many of you), please respond again so I see it! I want to make sure I have it all recorded for later, when I'm ready to make this book.
(Website followers can email: juliasfightagainstcancer@gmail.com) ~~~~~ I wish we had a much happier anniversary update. But both Reed and the doctors say she's not out yet. She's comfortable, and if the chemo is going to work, it would have just started to turn the tide in her cancer. She still has time for miracle #2. Video in comments.
YouTube: https://youtu.be/X4XCsZhuYwo . . .
*********** ~~ Julia Adams ~~ *********** ************* Official Links ************** ***************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://bit.ly/35ppbSx Jewelry: https://etsy.me/2E1mR8i Car Magnet: https://tinyurl.com/y4nxr3lr
Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
Chordoma Foundation: www.chordoma.org
If you're new and want to know what's going on, my first post about Julia was on October 31st 2018. You can find them all on my Facebook page or Julia's website <3
Thank you for reading and leaving comments, everyone. I do see these when they come in, but Wix (the platform we built the website on) hasn't made it easy to manage or respond directly to comments yet. In the mean time, know that we're reading them and if you have any questions or concerns that need a response, you can email us at juliasfightagainstcancer@gmail.com
I think I’ve followed Julia for just over a year. A friend on Facebook had shared a post of yours, and, having a then just 2 year old Julia of our own, I was compelled to follow your Julia’s story. I had to back up and read a bunch of older posts to catch up, and by the end, I was a blubbering mess. I checked in often after that. The days to live post broke me. I am not a church going person, but I believe there is something bigger than us. And I prayed hard. When Julia began to show improvement, it actually made my days brighter. How amazing it was to see her smiling and playing. Sitting…
I am wondeeimg if she just has edema maybe some lymphatic massage might help her abdomen. She could also have diastasis recti. I know that looks like swelling andmakes one appear to glow white in CAT scan images. Needs a plastic surgeon to diagnosis usually.
I no longer follow on Facebook because I got rid of my Facebook page. I never knew I could comment on here but I am not done praying yet either.
Amy I agree cry out again for more prayer. Prayer does work I have seen it work. That's why I don't stop praying. God bless.
For the record I am a heart not a sad face ever.
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Why do not others comment here? Strange. ~~~~~ Amy, send out another request for prayer, please, that this new chemo become effective and complete the job begun by the first chemo. This precious and beautiful child of God needs every chance possible, and it is not time to give up. I continue praying for a healing for her and will do so indefinitely. ~~~~~ At some point, after Julia is in rehab or home again, I will do as you ask and tell you what following her story has meant to me. Love that you wish to make such a book, and that both Julia and Gabriel will have it to reflect upon. Could even be helpful in pullin…