March 25, 2019
Julia had a good day today =) Vitals are improving as she recovers from chemo: heart rate 120s, ET high 30s, BP 88/63. Still no fevers or complications. She vomited once around 6am, and then once about an hour ago (but it was during her bath time when her trach area was getting cleaned - they think she has a super sensitive gag reflex, so they aren't really counting that as a barf).
Child Life visited again today and brought an interactive book. Julia REALLY liked it! I have several interactive books, but I guess I don't have their talent for getting toddlers involved. This Child Life specialist had Julia pointing at things, and smiling, and EVEN TURNING THE PAGES!! She could only move her wrist and forearm a bit, but Julia was 100% turning the pages on her own! She was really enjoying the story. Reed said it was, "About Gorilla's or something stupid" (that's Reed talk for "cute animal story"). So that's so great to see Julia having a good time with a stranger - she SO just wants to be a normal toddler <3
No PT today as they're staggering specialists. So that should be tomorrow. Left arm and both legs continue to be stable (minor movements, definitely there, no noticeable improvement). The nutritionist visited Reed today and had questions that he couldn't answer, so I will meet with her tomorrow to make the formula switch official. And Julia is COMPLETELY AMUSED by smacking Reed in the face, poking his nose, and fishhooking his mouth. She really thinks its the best thing ever (so of course he lets her do it) and she giggles and giggles =)
Ophthalmology (-- first time I spelled that correctly! --) stopped by to look at her eyes again, just due to Reed seeing the right one behave oddly. They don't believe there is anything wrong. They believe she has nerve damage from the cancer and stroke (which we know about). They believe her eyes are acting normally for 'regaining' functionality. They believe she CAN see out of her right eye (YAY!) and they believe she is favoring her right eye. They explained it like... your brain sends signals to both eyes at the same time... when her eyes get that signal, to like, look to the right, she WANTS her right eye to do the looking. But that eye is slow, and can't move as far, so she struggles to move it. Because she's so focused on moving that one, the left one kind of wigs out and does its own thing (because it's not hindered in any way). So it looks like her eyes are just spasming all crazy, but that doesn't appear to be the case. She's just working really hard at using her right eye. They don't know why she's favoring it, and they don't know the quality of her eyesight. But they are sure she CAN see out of her right eye, and seems to focus with that one first. They tried to check for pupil response but she HATES IT. HATES HATE HATES. So they said, because there are no immediate concerns about brain pressure [which is what the eye checks were for in the first place], to just stop checking for pupil reaction for the time being. She hates it, and she appears to be improving... so unless there is a concern, just stop shining bright lights in there. So now they might check once a week just to see if there's an improvement, rather than every few hours. I'm good with that.
The oncology team also stopped in today and they are "very pleased with her remarkable improvement". They can't guarantee anything of course... not even a little... but it is SO AMAZING TO HEAR THEM SAY IT'S 'REMARKABLE'. OMGosh. I used to look at this team as like... death eaters. That's what I called them in my head. The oncology team and PACT team just like, floated into her room as a morbid group, and always had awful, horrible, depressing news. It was never good. I just imagined them floating around from room to room telling people how their kids were going to die. No joke. So to know they are looking at her as REMARKABLE just makes me so happy and optimistic!
Quick update on me: I saw a GI specialist today. Based on symptoms, he does not think it's anything related to my stomach (despite the location of pain), so he is not going to do an endoscopy. He also doesn't believe it's a gallbladder issue, due to side the pain is on and how my gallbladder looks on my scans, BUT he said it's possible to have gallbladder issues with no stones, and I do meet the criteria for 'most likely to have issues' (woman, 30s, has kids, overweight). So he wrote a script for a HIDA scan (as some Facebook friends suggested). He said he doesn't expect it to come back positive, but if it does, he "wouldn't be surprised". His best guess is a herniated disc. He says based on how the pain is radiating, and that it gets worse when I move. Nothing suggests an ulcer, and the ulcer meds I'm taking aren't doing anything at all to help. I thought he was crazy for suggesting disc, since it feels so internal. But I went to my chiropractor and he agreed, and showed me all the organs that would get deferred pain from a disc issue in my mid back... it's all the organs that hurt (stomach, pancreas, liver, kidneys). It's hard to believe a pain further on my side could be from my spine... but I did have an ectopic pregnancy rupture (my whole fallopian tube exploded) and I felt nothing down there, but HORRIBLE pain in my right shoulder... so I guess it can happen. I just feel like if you can pinpoint the pain, the issue should be right there! I guess it would take an MRI to see it. So in the meanwhile, I'm seeing him for adjustments, I'll continue to take the ulcer medicine for 2 weeks, and I'll get on the schedule for a HIDA scan.
Oh. He assured me I do NOT have cancer, at least in the 20 inches of my mid-section that have been scanned. And he assured me that my organs won't "pop" if I bend funny... which was a legitimate concern of mine. He asked me why I'm so paranoid. ... I told him. He understands =)
Alright, back to Julia. I was talking to someone today about everything Julia has been through. So I thought for tonight's update I'd "quickly" go through all my posts since October 31st and do a quick timeline or Julia's new Facebook friends. LOL. This poor girl has been through SO MUCH... I spent 1.5 hours and only read through Nov and Dec. So... that's on hold for another night this week. I'd love to get everyone caught up... but it took way to long. And WOW has this poor girl been through stuff. I had blocked most of it out. I'm just getting to early January where we got the "days to live" news. It's not as traumatic as I thought it would be, re-reading everything... because LOOK AT HER!! She's just doing SO WELL!!
Reed sent me this picture of her trying to do RASPBERRIES AGAIN! She loooooved doing raspberries and slobbering all over the place before she got sick. She doesn't have the air passing through her mouth to make the ... like, raspberry motion. But she sticks her tongue out like she's trying and nods 'yes' to "are you doing raspberries?" Super sweet to see <3 <3 <3 (And I know I have a picture of her picking raspberries last summer, and thought it would be cute to include... but while looking, I found this very sweet picture of her and my dad discussing where he was going to build her tire swing. This was in between my dad's 2nd and 3rd brain surgeries (2 weeks apart). He loved Julia so much <3 I hope someone can help me get a tire swing there for my kiddos in honor of my dad!)
. . . ******************************** ********** Official Links *********** (These are here because of scammers) ********************************
Julia's *only* website: juliaadamscancerfund.org Julia's *only" Facebook page: facebook.com/JuliaAdamsCancerFund Julia's *only* GoFundMe: gofundme.com/juliasfightagainstcancer Julia's *only* official fundraisers: T-shirts - https://bit.ly/2MQc0lF | Jewelry: https://etsy.me/2E1mR8i Where I buy Julia's CBD Oil (CBD BioCare 3500mg bottle): www.naturallywellforlife.com || Coupon code: danaboyd
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