It's the 30th of the month, so that means it's been 11 months since we took Julia to the ER with a painful stiff neck. I remember being so frustrated at having to stay there one night... and then one week... and then I looked forward to all being home by Thanksgiving... and then Christmas. Now... 11 months down, 1 more month until we hit the 1 year mark. In addition to being in the hospital for 11 months, Julia had her initial tumor removal surgery on November 16th, the day of my dads funeral. Reed opted to not send me a picture that evening because she was in such bad shape, he was even prepped by the nurses as to "what he was about to see". He advised me not to go down... she would be sedated for days and I would have absolutely freaked out. (This knowledge coming from how I handled seeing my dad come out of brain surgery a few months prior... I believe I ran down the hall and hid behind the trash can in the corner. No exaggeration.) Since that surgery, she has been bed-bound for 318 days. PT/OT has gotten her up a handful of times, but chemo has really held her back. It's time to get this girl into REHAB! At this point baby brother is going to be teaching big sister how to walk =) ~~~~ The big news today is surprise MRI! That was totally unexpected. Her team insists it happened earlier than scheduled solely because there was a cancellation that fit the time requirement (hers takes longer than average). But they specifically said there have been absolutely no medical concerns or neurological changes that prompted this test. And I had to ask... because in January they did an "unexpected MRI" and we were told the next day she was dying... so clearly they saw something concerning before hand. I guess that is not the case this time. No results yet. Another NP confirmed the only thing in her notes is that we're fighting off this blood infection, and he ALSO commented that it's "very strange" that they saw it that one day, with high fevers, and then nothing. They sedated her this time with just gas through her vent, rather than IV. I have no idea why, but I guess it worked great. But just like recent sedations, she "woke up swinging" well before they expected her to. I've recently learned that prolonged use of her alternative meds can possibly have this effect (less effective sedation) - and I reminded her team a few nights ago. Perhaps that's why they switched to gas to see if it held better. But apparently they had plans to do her trach change (back from MRI-safe trach to her normal trach), her chest port needle change, and her audiology exam that she refused to cooperate for yesterday, all while she was still sedated. NOPE! They touched her trach and her eyes flew open and her little arms started swinging =) That's my girl! I was on the phone with Reed and heard one of the nurses say "sorry... honest to God I expected her to be more out than this..." . So she spent most of the day sedated, or loopy from sedation. She has been the HAPPIEST SMILIEST BABY while awake. After the MRI, neurology came in to check her shunt. Apparently the powerful magnet from the MRI can spin it and change settings... crazy. So they used a magnet compass thing to check it, and then used a magnet to spin it right in her head. I got a video of it just because I thought it was cool... but you really can't see much. And she has a bandage over the scar she's been scratching on the back of her head, so it should be healing nicely. ~~~~~~~~~~~~~~~~~~~~~~~~
An 11 year old named Jackson:
~~~~~~~~~~~~~~~~~~~~~~~~ Several weeks ago I asked for information for a young boy on hospice care. He was given no hope, but his family was desperate to at least try the alternative therapies Julia has been using. Jackson was so ill he couldn't ingest anything, so I asked for advice on how they could get a feeding tube inserted while on hospice care (because typically that can't happen). They ended up getting the feeding tube with no issue, and several people have since asked for an update. I'll let his mom's words do the talking (with link to follow his page below): September 11
"Jackson is receiving an alternative source of medication that may help with his quality of life. It may help shrink his tumor, it may do several things, however in the state of Texas it is still considered taboo.
In the last several weeks, Jackson has been very fatigued and we were giving him medication for anxiety. He was showing a rapid decline. Not swallowing, barely walking, could not put words together, etc. I started thinking this was nearing the end. On Friday, Jackson told me he wanted to give up. When you think you’ve heard the worst news possible, and then get slammed with this coming from your child, the pain I felt was like no other pain I’ve ever felt. It was an all new type of pain, one that doesn’t lessen with time. A pain so deep that my stomach churns as I write this.
I had been in contact with some amazing people that had been through a similar situation and asked if I had tried this alternative method. We had tried everything except this, because we didn’t know much about it. They offered to help because they truly believed in it and genuinely want to help Jackson.
We began our first dose on Saturday morning...."
And from a few days ago:
"Man, what a day!
For breakfast, Jackson ate: Ham, bacon, toast, a banana, a croissant, and drank water. For a tasty treat he ate M&M’s and a sucker. For lunch, Jackson ate:Grilled chicken and 4 slices of watermelon, followed by a root beer. For dinner, Jackson ate: Steak and chicken fajita meat, a tortilla, and 3 more pieces of watermelon, and drank water.
He’s only used his NG Tube for medication today! He’s regained the ability to know when he needs to use the restroom, and he took 4 steps only holding one of my hands! At first he was angry that I wouldn’t give him both hands, but I told him that fear was the only thing stopping him from moving forward and I wouldn’t let anything happen to him. So, he tried it!
He sat in the living room with me for a long time today, which he hasn’t done since the weekend, and he ate dinner with us AT THE KITCHEN TABLE, which I can not recall the last time he’s done that!
This kiddo amazes me. He’s some kind of wonderful, and he’s my hero. He went from sleeping all day and all night to being up all day, I get to have conversations with him again, sing songs with him again, take silly pictures, watch nature shows and hear him scream with me every time an animal doesn’t “make it”.
I am exhausted but my heart is full...exploding kind of full. I don’t know what tomorrow looks like, but today....today was nothing short of a miracle."
You all know I struggle with referring to Julia as a miracle... but if this all happened for a reason, and her suffering meant something, I hope it's to lead other children to these possibly life-saving treatment options. I hope we're getting ready to witness miracle #2 in Jackson:
https://www.facebook.com/groups/2042868732675079/ ~~~~ Video in comments: Julia getting her shunt adjusted, and then cuddling with daddy <3
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Facebook: Julia's Fight Against Rare Cancer - Fund
Julia's official fundraisers: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S Jewelry: https://etsy.me/2E1mR8i Tumbler: https://tinyurl.com/yy6oamph 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. You can find them all on my Facebook page or Julia's website <3