September 2, 2019
GROUCHY day. For everyone. Julia has been understandably fussy today. She grumped all morning. Grumped while watching Peppa. Grumped while playing with her grocery basket. Grumped while on FaceTime with Charlene and Gabriel. Grump grump grump.
She's miserable from the chemo and she's still on the steroid so roid-rage baby is back. This angry phase where she's just in a bad mood, and wants to scratch and fight, lasts about ~5 days after chemo is over. She also doesn't nap very well after chemo, possibly due to steroids, so that doesn't help.
But despite everything, she slept with no breathing rate again last night, and has been going strong on her HME since 11am. She's vomited a few times, as expected, and once during her string change which is extra fun to deal with. She hasn't done that in a while.
She did take a short evening nap, and has done a bit better since then. She even said yes to coloring, so they sat her up nice and tall in bed (PT has been working on that!), and gave her her coloring table and some markers. She had a... happy/angry coloring session, and then fell asleep. One second she was holding a marker, the next she wasn't and her eyes were shut! Out just like that.
I'm really really really hoping to avoid complications again as her counts start to fall this week. When we opted for this more-intense chemo back in January, we were told the risk of complications (such as infection) is 80%. So far... she has done phenomenally well. She has very normal side effects, such as nausea, but no emergencies. Two more cycles of counts dropping to go, and then her body gets a break.
I have been having a pretty awful few days. No... not awful. Julia's days are awful. But my last few days have been rough. So I'm going to complain. Feel free to skip to the cute video in the comments (seriously).
I haven't seen Julia in going on two weeks, and it's really getting to me. I last saw her two Wednesdays ago. I usually see her Thursdays, but I had to have Gabriel and we're keeping them separated. On weekends (Fri, Sat, Sun) I have Gabriel so I didn't see her last weekend, as scheduled. Monday I started feeling under the weather and didn't want to risk giving her germs. Sure enough, something hit Tuesday, and Wed-Fri of this week was miserable. Some sort of stomach bug - fever and all kinds of unpleasantness. The hospital said because I had a fever, they wanted me to stay way for 48 hours after last symptoms. Saturday I figured I was over it, so I was going to give it Sunday to be sure, and then go see her today. Well last night I started to feel bad again, and I woke up today and I feel even worse. I thought it was a stomach bug during the week, but now I think it's the flu (just a few hours after I told my nutritionist I DIDN'T think it's the flu!). Every muscle hurts, I have a headache, I'm so exhausted I get dizzy when I walk up the stairs, in addition the same stomach unpleasantness as during the week. And my fever is back - 102 as of 4pm. So feeling like crap aside, now it's another several days before I can even consider seeing Julia. And some of Charlene's family came down with a bug (possibly what I have, possibly back-to-school related), so I didn't take Gabriel back this weekend. I mean... for the better... he doesn't need what I have. But OMG I'm so tired of not being able to see either of my kids.
It makes me want to live in a bubble. Like... where did I get these germs? From my work? From physical therapy? From someone in an elevator? I am so obsessive about staying away from sick people, and sanitizing, and avoiding places where there are germs. And my whole life I've gotten like... baby colds. I'd get over them in a day or two. But... I don't know if it's stress or what, but everything knocks me on my ass now. It's awful. I've never been sick for an entire week.
And like, not seeing Gabriel for a week. Whatever. He's happy, he's well taken care of, I have "all the time in the world" to see him. But with Julia... I just don't have that confidence. I try to stay hopeful and optimistic, but I always have to wonder, what percentage of her life am I missing right now with this illness? Hopefully 2 weeks is just a fraction of a fraction... but that's not always the reality with childhood cancer. It really makes me struggle between staying away and seeing her. I have been given a gift - more time - and many parents in my situation never get that. And right now I'm not with her. But being near her could put her at serious risk... her white cells will be dropping this week. She only has one round of chemo left. I want to stay away to keep her safe, but I want to be with her in case our time is limited. I mean, I have to stay away. It's not really a choice. I just hate feeling so helpless.
(Way) Less serious, I dropped my phone in water. And even knowing better, I tried turning it on. So of course it died immediately. It's been in rice for several days - turned on for 30 minutes, and now it's stuck in an infinite boot loop. I can't bring it to a store because I'm sick. So now I can't even FaceTime Julia.
AND I tried to make good use of my kid-free (albeit sick) weekend and get some cleaning done... because oh man my house needs it. I tried to clean the grout in my shower because I'm pretty sure it's growing mold. We had an issue with leaking a year ago, so we got the grout replaced and the tile re-sealed last August. Within 3 months I thought I started to see a mold issue, but that was shortly after Julia was diagnosed, so other than routine cleaning, I pretty much ignored it. So I really scrubbed it yesterday... I didn't get it all up, but felt I made progress. But today, it leaked downstairs again. So I guess I messed something up.
I had something else to complain about, but now I can't remember. I guess it wasn't that big of a deal!
Oh, and neither here nor there really, but I use a digital thermometer that goes right to an app on my phone, and everything is very graphical and it keeps a history for everyone in the family (it's pretty awesome). So when I was taking my temp, I looked at Julia's history, and I noticed we took her temperature a LOT last October. Like, 50 times. It was always fine, but clearly we thought something was going on.
I did get to Facebook Video with Gabriel today, which was really nice. And Reed sent me a sweet video of Julia (in comments), but I'm really struggling today. I feel like crap and I'm so tired of missing my kids. I am the mother of two toddlers, and I have no idea what toddlerhood is like.
. ********** ~~ 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: T-shirts: https://bit.ly/2MQc0lF | https://tinyurl.com/y55lh988 Children's Book: https://amzn.to/2CTTN2S 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. You can find them all on my Facebook page or Julia's website <3