Today is the 6th, so that means she's now 7 MONTHS past "days to live".
In early January, after a dozen complications and delays in treatment, Julia's right eyelid started drooping and she stopped using her right arm. This was concerning, as that side of the body should not have been affected by the recent stroke (which was the assumed cause of her left-side weakness). So they did another MRI, and saw that in the previous 6 days, the tumor wrapped around her brain stem had QUADRUPLED in size. It now took up all available space inside her spinal column, and her brain stem was being compressed to almost nothing.
Just when we thought we'd finally start fighting this, we were told nothing more could be done. There was so little room left, that any amount of swelling would kill her. Surgery, radiation, and chemo all cause swelling. They said, that if by some miracle, this cancer was stopped or even partially destroyed, her brain stem had already suffered so much damage that she'd have no quality of life. She'd never walk, talk, or see again. She'd live, for however long, in that vegetative state. So they switched her to hospice care, and medications and interventions were focused solely on her comfort.
Over the next week, she lost all physical ability: she couldn't move any part of her body, and if you opened her eyelids she just stared straight ahead. Eventually even her pupils stopped responding to light. Her body struggled to stabilize her vitals. Her end-tidal (Co2) was nearing the 90s. Her breathing was ragged and intermittent. Her heart rate spiked between 50 and 200. And her blood pressure was 180s/130s, sometimes climbing as high 200+. Her body was going to fail at any moment.
I asked how they expected her to die. They said the increasing brain stem compression would eventually inhibit the transmission of critical information, preventing her brain from supporting organ function. Something would fail: either her lungs or her heart. I asked if she'd suffer. They said they wouldn't let her.
That was 7 months ago.
Things Julia did today:
--- Threw her groceries on the floor (photo evidence)
--- Gave a dozen 1 and 1/2-armed daddy hugs
--- Pushed Reed away because he leaned in front of her iPad
--- Tolerated her HME for more than SIX HOURS!
--- Started round 10 of chemo
--- Hit a new milestone in PT (video evidence)
Over the months of February and March, Julia fully regained consciousness. The tumor is no longer compressing her brain stem, and is 'stable' according to the most recent MRI. She remembers everything from before her coma, has the same mannerisms, and is 'neurologically perfect' according to her neurology team.
She still has a ways to go. She needs to recover from stroke damage, rebuild strength and stamina to get off the trach, and work hard at PT to re-learn how to walk. And most importantly, stay healthy during the chemo process and continue to fight off this cancer.
I've said it before, but it bears repeating: we don't know what's working. She immediately started on high doses of CBD and RSO - this appeared to have stabilized her within days. Prayers flooded in from literally around the world. Then we added the PEMF mat. And two weeks later her chemo began: this particular protocol doesn't usually work, but it has for at least two other children. Finally we optimized her nutrition (real food, organic, plant-based). All of these therapies have continued at full-strength.
Picture tonight: I've not shared any pictures from the "final photos" we had done in January, but I thought today was appropriate. This picture was taken shortly after we got the news. At this point she could still open her left eye, but it only stared forward. A few days later she finally lost control of that as well. We expected it would be forever.
But now it's 7 months past "days to live"... our toddler can't quite move around like most, but she's certainly a toddler! Pictures are of "grocery-chuckin'" toddler, "PT-fussin'" toddler, and "too-tired-to-iPad" toddler <3 <3 <3
-- Photography done by Melania. I don't know who got her in touch with us, but she reached out, was so kind and professional during a highly emotional session, and gifted us these beautiful photographs. https://www.facebook.com/MelaniaMartaPhotography/ --
Video in comments: Julia last January, and then Julia today! She got on the floor for PT and they had her in a crawl position! She's supporting her weight on her arms, and she even helped push herself to sitting. She hated it, of course. And the HME is on, so she's extra loud (she hated that too). ...And we get a solid 'no-finger' at the end. BUT WHO CARES. She's HERE to hate PT!
So happy 7 months to our Warrior Princess Julia <3
. ********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
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