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November 22, 2018

Some years it's VERY hard to be thankful...

But I'm thankful we caught the cancer as early as we did, giving her the best possible chance at beating it. I'm thankful we're within a 1 hour drive to one of the best pediatric cancer centers in the world - who DO have cases of success against this tumor. I'm thankful that I have a sister-in-law who just scooped up my baby and will keep him as long as required, even if that's month, and that he's being loved and cared for better than if he were with me (no joke) [and I have several friends and family lined up behind her to watch Gabriel if needed!] I'm thankful that everyone has continued to offer to help in all kinds of ways that I didn't even consider, like making dinners and plowing my steep driveway. I'm thankful that Reed and I are so sick right now, while Julia's sedated and doesn't need us, and that we're building up our immunity to fully be available for her when it counts. And I'm thankful that both Reed and I work for completely different companies (his large, mine small), and both have been nothing but sympathetic and continue to do everything they can to preserve our jobs and more... really going way above and beyond to help.

Considering our really fucking awful situation, there are still many things to be thankful for. We live in a place and time where Julia has a chance.

I spoke with her nurse today. Her swelling continues to decrease and she's been on a new medication to help "pull out water" to assist in swelling reduction. She's successfully taking her full amount of nutrition through the feeding tube without vomiting. She's on a full regimen of GI assistance, and last I heard, they're just waiting for her to poop for the first time. She's on several medications for that, including a suppository, so we're really hopeful something starts moving for her real soon so they don't need to decrease her food.

I do feel like I've missed some information because the nurse just started talking about her OR visit that's scheduled for Monday to change her breathing tube. I believe the nurse thought I've spoken with a doctor, which I haven't, so I got what information I could from her. Julia will remain sedated throughout the weekend, and on Monday she will go to the OR to have her breathing tube replaced. From what I gathered, the one she has now could easily become dislodged with any movement, so they want to make sure a much more secure one is in place before starting the wake-up process. That will be done in the OR just so they are fully prepared for any complications. And the nurse did say there is a plan in place to wake her up, and the whole team will be discussing the options with us, such as anti-anxiety medications. I believe we're looking at Tuesday.

So right now Reed and I are just resting as much as possible and really hoping we can fight off these colds in the next day or two so we can get down there to be with her and start discussing the next few weeks. I can't wait for her to wake up.

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