<3 <3 <3 Happy birthday Julia! She is officially 3! ~~~~ She had a good night, but an only OK day. She was up all night again and didn't go to bed until 6. At this point, we accept that getting her sleep schedule adjusted is a losing battle. So... whatever she wants to do. Night owl Julia. But during the night she actually played a little bit! She really wanted her iPad, but it was out of batteries, so Reed gave her her grocery basket. She managed to pull some foods out on her own and threw them back in, then eventually dumped the whole thing. Not what she could do two months ago, but not bad for being so weak. She also asked for lots of cuddles, and even pointed to her cheek a few times (that's how she asks for kisses). She didn't go to sleep until this morning, and didn't sleep very well. As the day went on, she got more and more "irritable". I put that in quotes because I know what an irritable Julia looks like. When I got down here this afternoon, it was 40% irritable 60% pain. She was very clearly uncomfortable. I know Reed and nurses kind of have a different perspective than I do, since I'm not here 24/7, I think a change over several hours is more noticeable to me because I don't see the slow decline. She was definitely tired, and really needed to sleep, but I think some serious discomfort was preventing that. That was clear the moment I walked in. So I asked for some birthday Morphine*. It was already ordered in her chart, because they expected she'd be here eventually, so they gave that to her along with some Tylenol. And she was sooooo much better. She started settling down in 5 minutes, and was asleep by 10. She took a very comfortable 3.5 hour nap. *Since I've already been through the "Morphine kills" comments last January, I thought I'd just address them here. Yes, Morphine can kill you. Yes, it is often prescribed at end-of-life when the patient is dying regardless, and grieving people may associate the death with the drug. But when dosed and given by qualified professionals (like here at CHOP) it can relieve respiratory distress and provide amazing pain relief, especially with late-stage cancer. Her respiratory stats are being closely monitored, and there are interventions should anything concerning happen. If this does become part of her medical plan, we expect her to be very tired for several days as her body adjusts. We are totally on board with this comfort care approach, and we agree with the oncology team when they say that adding this medication does not mean, in any way, that they are "giving up" or trying to hasten her death. . So we had a small team meeting today with neuro-oncology just to discuss where we stand and what some options are. Here are the highlights: --- We agree with continuing the current oral chemo / Mebendazole. At this point, she has not been on either treatment long enough where results would even be expected. We could switch courses, but there is nothing better out there... only different. All of our treatment options are based on one-off case studies. So we agree with staying this course and hoping she (comfortably) hangs on long enough for her cancer to respond. --- We reviewed again some clinical trials and other things like vaccine/virus injections. Her tumor's specific markers, as well as her overall strength/immunity, need to be taken into account. Many are off the table because they aren't expected to work, or because she's too weak, or because of exactly where the cancer has spread. There are two that they will look into more, but we'd only move forward if they were complementary to her current treatment plan. Neither is a miracle. --- Oncology and pharmacy are still very much 'trying'. They are looking into all kinds of combinations, things that have worked on different cancers and might work on hers, unusual protocols other hospitals have tried, combos that won't cause serious side effects or interact with other meds. But with such a rare cancer, we're kind of having to make it up as we go, and most of these treatment options take months to see anything; she's only been using them for 2-3 weeks. --- The cancer in the fluid near her lungs IS the same cancer - so she hasn't developed a secondary cancer (at least not that we know of). I mean, we're obviously not happy that the cancer has spread beyond the initial tumor site, but this is probably the better of the two options. --- Since her heart rate has been so high, they did an ultrasound to make sure no fluid is collecting around her heart (it isn't). A follow-up x-ray to check the lung fluid will happen tomorrow morning. Given her apparent pain level today, my assumption is there is another big pocket of fluid needing drained. --- They are going to do a full body PET scan to check for activity. This scan isn't normally done with her cancer (there are better scans), but now that cancer has been found elsewhere, they want to see what it's up to. This would be for pain management purposes rather than treatment purposes, as whether they find 0 tumors or 100, we're going to continue what we're doing. But if she does have cancer elsewhere, it could give us better ideas of how to manage pain, as different medications are used for things like bone tumors vs digestive tract tumors vs nerve pain. So since Julia can't really communicate well, we want to know exactly what we're dealing with so we can be proactive. ~~~~ So that's where we are. Not the best birthday on the books for Julia... but I guess last year she had a halo brace bolted to her skull and a breathing tube down her throat... so it's probably not the worst? At least she got cuddles and iPad today. We can hope next year's will be much better =) Video in comments. (Well, there will be. My program isn't cooperating. Hopefully I'll get it up in a few minutes.)
YouTube: https://youtu.be/bs5hZA6EpF8 . . .
********** ~~ Julia Adams ~~ *********** ************* Official Links ************* **************************************
Julia's official pages:
Website: juliaadamscancerfund.org
Facebook: Julia's Fight Against Rare Cancer - Fund
GoFundMe: gofundme.com/juliasfightagainstcancer
Julia's official fundraisers: Ornaments: https://etsy.me/2XAd8PP T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 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 2018. You can find them all on my Facebook page or Julia's website <3
