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September 24, 2019

2nd rough day in a row. Very few smiles today. Her vitals are not great. Not alarming, but she's clearly miserable. Oxygen saturation in the high 80s (lots of gurgling and spitting) and heart rate is sitting in the 180s. They gave her some fluids to try to get her heart rate down with no success. So they tried some Tylenol. Honestly, Tylenol is kind of a miracle drug for her around here. I'm personally convinced Tylenol is a sugar pill, considering how useless it was during pregnancy (lol @ being told to take Tylenol for a migraine!) But it seems to really do wonders for her. Edit: Sleeping comfortably with heart rate in 160s as of posting. She hasn't thrown up once! Huge improvement over 7 times yesterday. But honestly... she's so squirmy and miserable she'd probably feel better if she barfed. Also, that means today is the first day in many days she hasn't gotten any of her nausea meds... which help knock her out. She just got more labs done. White cells are at 0. Platelets are in the 120s (they like to see them 200+, they often transfuse at <100 for her due to her stroke history). And hemoglobin is 8.5, they often transfuse below 8. So they're expecting she'll need another blood transfusion tonight or tomorrow. No one is surprised by her condition. Her counts are bottomed out, so if everything goes as planned, this is the worst of it. She should start feeling better in the next few days as everything starts to come back up. ~~~~ We toured Dupont today. Wow. It is quite the facility. The whole building is brand new and it's very impressive. Just the fact that it's not in the middle of a city already makes it feel more like home. You park right out front (for free!). The surrounding area is beautiful. The Atrium is so bright and open. The rooms are.... very nice. It's like a hotel. They're all private, the window is HUGE, and the one we saw looked out over a forest... the view is awesome. I can only imagine how it will look come winter - I would LOVE for her to have that. There are 2 TVs, one for the patient, one for the parent (Reed doesn't care), they have a large couch AND room for an actual cot (Reed doesn't care), they have a lockable... locker for your clothes (Reed doesn't care), lots of walk-around room (Reed doesn't care), a full private bathroom (Reed doesn't care), AND a refrigerator! (...Reed doesn't care). So, the person who doesn't stay there thinks the rooms are pretty fantastic =) The rehab gym is huuuuuge. They have everything you could imagine. All kinds of private rooms for quiet learning - speech therapy, special devices, education, TVs, games, etc. The floor has stuff all over it for hop scotch, and jumping, and running. They have tracks on the ceiling for harnesses to assist kids when they start getting up. They have every seat/standing device you could imagine. Ramps, and pads, and bands, and exercise balls. We visited during prime time (I assume) and there was just so much space available. One huge plus is their germ precaution. The rehab facility is located IN the hospital, and they have typical hospital flu policies. I like that a LOT. Good Shepherd also has precautions, but I feel it's a little more lax. Dupont feels more like they're used to chemo kids. Also, admittedly a personal hangup of mine, it felt so reassuring to see all the doctors and nurses walking the halls. Good Shepherd would call 911 for an emergency... Dupont IS 911. They wouldn't have to send her anywhere for anything. Julia hasn't had an emergency-emergency since December (with her brain swelling/stroke), but the paranoia is still very much there for me. Traditional treatment has stopped, so she will be going into a 1-3 month rehab program with no chemo attacking the cancer. We've seen that her tumor can be super aggressive - quadrupling in size and putting her into coma in a weeks time. Is Good Shepherd ready for that possibility? Are they experienced and qualified enough to detect and act on brain swelling before it's fatal? Because when Julia's brain swelled in December, they drilled into her head then and there. Who knows if that will happen again... but with chemo stopping, I'm afraid of how the next 3 months look. I would feel so much more comfortable IN a hospital. And of course, the drive. Dupont is like, 35 minutes away. CHOP is 45 min - 2 hours depending on what time of day / how many people crash on 76. Good Shepherd is 1.5 hours minimum. It's just so close. Visiting would be rough at Good Shepherd. I normally see Julia M, T, W, Th after work until pretty late... but that's a 3 hour round trip. I'd do it, but ugh. And of course as her immune system recovers, I want to get Gabriel in to visit her regularly. Thinking of doing that drive 5-6x a week is exhausting... and I'm already exhausted. I'm just so ready to be done driving hours a day to see people in the hospital. It's been 1.5 years. Also, really not a factor, but as soon as I pulled out of Dupont I saw AstraZeneca is right there. That's where my dad worked for a long time - that same building. He spoke of it fondly his whole life... all the restaurants he used to talk about are still there. It just felt close to him. I didn't know the buildings were right next to each other. And, Reed and I used to live just a few miles from there (I had no idea), so it just FEELS better. Not a factor in choosing her care facility, but a nice bonus if that's the one. So we talked with admissions for quite a while. Everything sounded hopeful. I told her Julia's story from the beginning and she took lots of notes. I guess CHOP had sent over 200+ pages of information... but that's a lot to read through. We talked about the doctor already saying she's not a candidate while she was still on chemo, and she agreed that's not a reasonable time to evaluate. Though she did mention the more recent PT notes looked better. She agrees we should re-evaluate Julia several weeks after chemo. There also seemed to be some confusion as to our intentions after CHOP and whether or not acute rehab is the right choice. So we clarified everything, and I guess she's going to update the doctors at their weekly admissions meeting. So, because of the rehab facility, the fact that it's a hospital, and the MUCH better drive... I think I have to say I'd prefer Dupont. However, if it just can't happen for whatever reason, we would make Good Shepherd work. (And I'm getting some wedding-sister-in-law-drama vibes between CHOP and Dupont. Neither one will say anything outright.. but they really don't seem to like each other. Weird.) ~~~~ Anyway! Picture today - The closest thing to a family photo, from our FaceTime the other night <3 And I promised a Julia video. So... Julia video in comments.




********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************

Julia's official pages:

Facebook: Julia's Fight Against Rare Cancer - Fund

Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): || Coupon code: danaboyd

Chordoma Foundation:

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

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