She's still hanging on, and comfortable, but I'm afraid we're pretty close to the end.
Just a few days ago, her heart rate was sustained 170+. Within the last 48 hours, it's been dropping by a point or two every 30 minutes, and it doesn't go back up. We've watched it fall through the 140s, 130s, and 120s today. Right now it's at 107. This is still with the full dose of epinephrine for her blood pressure (which raises heart rate). Her body is just getting tired.
In addition, she's now been bumped up to 80% oxygen assistance (21% is normal - she was at 35% just a few days ago), and even now, she's only saturating in the low 90s. Blood work today confirms her levels have gotten bad fast. I don't know much about lab results, but they said the amount of lactate (sp?) is "alarmingly high".
Blood pressure is currently 43/16 MAP of 23. Her temperature has been cool. Physically she looks a lot worse today. Lots of changes to her body within the last 12 hours. I won't go into detail. But she changed pretty much overnight, and as soon as I saw her, I asked to add the sedation and increase the Morphine. There is absolutely no indication she's in pain, but it's time to be sure.
I'm not even going to say she's sleeping, because she's likely just knocked out. Her face is slack; her lips no longer move when we touch them. So, it's safe to say she is at least comfortable. When we're not next to her, we've been cycling through all her favorite shows so she's got a little variety if she can still hear.
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Julia's journey is coming to an end, but unfortunately, it's just beginning for other kids. Or beginning again, like in Jaxson's case... he already fought the fight, and won. And now at just 5 years old he has to fight it again. He is here at CHOP, and his family has been major cheerleaders for Julia since well before I knew what we were in for -- they had already been through it.
Your support for our family has made this all much more bearable, so if you have the capacity, send your love over to this sweet boy while he goes in for round two.
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A message from his mother:
In 2015 Jaxson celebrated his first birthday with family and friends. Just days later, this happy and presumed healthy 1 year old was diagnosed with a rare brain tumor called ATRT. This tumor is usually diagnosed in children under the age of 3 years old and is extremely aggressive. Survival rates are low but Jaxson defied the odds and after 1 1/2 years of chemotherapy and proton radiation he was declared No Evidence of Disease (NED)!
However, just because treatment ended does not mean his journey is over. He had many follow up visits with multiple specialists throughout the year.
During his most recent routine MRI in February 2020, the oncologist found something concerning and further testing was needed. Following a brain surgery and biopsy, Jaxson’s mom and dad received the worst news they could get, the cancer is back!! Now this happy and healthy 5 year old has to go through cancer treatment for a second time. This round will be intense and will require inpatient stays for chemotherapy followed by 30 days of radiation to his brain and spine then more rounds of inpatient chemotherapy. We do not know how long treatment will last but We are hoping to finally beat the beast once and for all.
Prayers and shares are always appreciated. You can follow Jaxson’s Journey at facebook.com/Jaxson-Butkus-861724363914115/
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No video tonight.
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*********** ~~ Julia Adams ~~ ***********
************* Official Links *************
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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. A current summary can be found here: juliaadamscancerfund.org/summary
Amy, Reed, and Gabriel; No words can ever express how sorry I am for your loss. Our only comfort is knowing that sweet Julia is no longer in pain and is with our Father in Heaven. She now has beautiful Angel wings. God bless you all and remember you all are in our prayers. Much love for you all and our Warrior Princess, Julia. Love you all from Texas.
Julia is continuously in my prayers, and you too as her MOM AND THE FAMILY ALSO. I pray for peace for all of you.
She will always be in you Heart. I honestly don’t know how your so strong. Love from us in Texas were praying
Very difficult to have words when words are going to mean so little at this time. I'm still not ready to give up, but God didn't ask me or the outcome would be very different. The only saving grace I see here is that Julia and her beloved and loving grandfather will be together again, in perfect health, playing, running, sharing memories, and being there waiting for you after your long, long journey is over.
I'm so sorry, Amy and Reed and Gabriel and Aunty and Gunkle and cousins. You, Amy, have shown such grace through this, and all the more now, when the end is near. Perhaps other people's babies will be saved through what was learned from Julia's…
Amy
We are praying for your family and for sweet Julia
Your family has always had a special place in our hearts
My heart as a mother goes out to you because we have shared journeys together
I just pray that God will give you the same peace he gave me when He called our little girl home to Heaven
And I pray that you know what incredible parents you are and have been to little Julia
She has been such an amazing little fighter throughout this ordeal and is loved by so many
She has impacted the lives of others in a powerful way
God bless you all
Sending our love from Florida
Sweet baby girl, how we gave all come to love you inside out. You have changed the way I parent and most certainly my perspective on so many aspects. You are the strongest little lady I know. I am celebrating for you though knowing that so soon you are going to RUN!!! There is a whole cloud of witnesses ready to welcome you to your forever and ever home where you will never feel tired or icky again!! Until I see you again, dance and run!! Laugh and sing!!! Thank you for your journey.
Amy, my heart hurts for you and Reed and Gabriel. For your entire family. I cannot pretend to say I understand your pain. I can and…