Jocelyn had Round 2 of chemotherapy yesterday. A lot of you have been trying to get a hold of Jack and I regarding Round 2 and how she/we did with it. A lot of you. LOL I apologize if I haven't picked up the phone nor called you back nor responded to your text messages but when I say a lot of you contacted us I really mean A LOT of you. The phone was blowing up. SO, it's much easier to just write it all out here and say it once. :)
It was a super long day. We got there around 8:00am for the blood prework (the fingerstick) to check all of her counts - platelets, white blood cells, red blood cells, etc. Her counts looked great! Next was the check up by her oncologist. Everything looked great and we got the May schedule for all of her procedures (May is a VERY busy month for Jocelyn). And great things continue to happen!! While we were in the waiting room, Jocelyn began cruising again! SO happy!!!
(Baby Girl cruising)
On to the outpatient clinic for chemo!
Here was our day:
11:30 - 2 hour hydration
1:30 - 1 hour of Carboplatin
2:30 - 15 minute line flush
2:45 - 1 hour of Cyclophosphamide
3:45 - 15 minute line flush
4:00 - Doxorubicin
4:15 - 15 minute line flush
4:30 - 3 hour hydration
7:30 - Pack up and go home
Seems easy enough, right? Right? I had the honor of holding Jocelyn down while they accessed the mediport in her chest. *sigh* There's a memory I get to keep for the rest of my life. It kind of looks like a couch button they're pushing into her chest (of course in my exaggerated Mother Panic they may as well have staked a 4 inch PVC pipe into her torso - same difference) and she screamed through the whole thing. And that was more or less the beginning of the downfall of that day.
(AUTHOR'S NOTE: I know you're probably horrified now. Don't be. There's a Lidocane cream that we squirt onto the port site that numbs the heck out of the area, reducing any pain she may feel. I've been told by the nurses and doctors that it's no more painful and annoying and awful than a needle breaking your skin when you have blood drawn. I've talked to some of the kids who have mediports and while they say that yes it sucks, it's not that bad. Jocelyn was more pissed that she was being held down and manhandled by a bunch of people she didn't know. Seriously, she was fine afterwards. :) Pissed off, but fine.)
Jocelyn eventually calmed down and she was OK for a while after that. I got her some chicken and rice from Au Bon Pain and she happily nommed that on her bed while we all got our fill of Mickey Mouse Clubhouse on the hospital TV. She played some balloon pop game on Jack's iTouch and then moved onto more fun things on his iPad. Jocelyn eventually got super SUPER fussy; it was nappie-nap time. She did NOT go down without a fight. But she did eventually pass out.
Our nurse, fantastic nurse that she is (and I really do mean that) was on me about checking her diaper for urine output (they do a test on a little pad they put in her diaper) because if the urine is too concentrated it means she hasn't been properly hydrated and we can't give her the Cyclophosphamide if she isn't.
"But she's sleeping. She FINALLY fell asleep."
My nurse responds, "You know you're just prolonging it, right?" She truly was not being nasty, really she was stating the obvious. "Maybe if you just take a little peek under the side of her diaper and pull the pads out, she won't wake up." Good idea. GREAT idea in fact. If I'm slick about it, she'll be none the wiser and we'll just continue with the treatment, letting her sleep through as much of it as we can. So I did just that.
Fail. FAIL. Not only did I wake her up, but she flew into a tizzy. Not only did I wake her up and she flew into a tizzy, but you could see that the pee in the little diaper pads was a bit darker than it should be. Not only did I wake her up, and she flew into a tizzy, and the diaper pads were suspect, but her tizzy reached full blown rage proportions.
Jack and I took turns trying to console her. She was bonkers. The nurses were beside themselves. "Is this...usual?" one nurse asked, nervously.
"Yep. It's probably the steroids. It usually is. She screamed herself stupid the other night from 2:00 am to about 5:30am." True story.
It was getting ugly quick. But Jack and I are used to it at this point, and we got the green light for the Cyclophosphamide, so he went out to grab some snacks and whatnot, leaving me with my little hot-pink-leopard-print rage monster. And I mean that in the most loving way, honestly.
I had Jocelyn in my arms while she was thrashing. And I mean thrashing - throwing herself back, arms flailing, punching me, slapping me....listen, anyone who tells me that a punch from a raging 12 month old doesn't hurt can eat it. It hurt. Really, nothing I did even remotely calmed her down. Holding her. No. Laying her down. No. Rocking her. No. Trying to sit her on the bed. No. And now in the back of my mind a little voice is saying "Sedative. Sedative. Sedative." But I still tried.
At some point, while Jack was still getting snacks, I tried to adjust Jocelyn in my arms while she was thrashing around, just to keep her from throwing herself back so hard. As I adjusted her, I happened to look down between us and noticed immediately that we're both covered in blood. Her blood. I threw her down on the bed just as our nurse happened to walk into our cube and tore her romper open. Because Jocelyn had been thrashing so hard while I held her, she'd managed to pull part of her I.V. line out. Not that part that accessed her chest; the little "couch button" was still in the port in her chest with its access line still attached. It was the IV that was attached to the access line that was pulled out. And she was bleeding out of her access line, fast.
I yelled to the nurse, "HOLY SHIT SHE PULLED HER IV OUT!!" "What?!" she screamed. She jumped on Jocelyn quick to clamp shut the end of the access then jumped on the other end of the IV to keep the meds from spilling out. As I tried to wipe down a VERY upset Jocelyn as best I could and change her out of her bloody clothes, the nurse said "Jesus, I've never seen that happen before." To which I responded, "You've never had Jocelyn on your floor before." (AUTHOR'S NOTE: This is the second time Miss Jocelyn has pulled her IV out. The first time was the first day in PICU, thrashing again, and pulled the IV out of her wrist...subsequently bleeding on herself and Mommy. She's nothing if not consistent. :) )
At this point, Jocelyn was beside herself and after asking and eventually sending Jack after the nurses, we were finally allowed to give her Ativan, an anti-anxiety drug they use to calm her down versus unnecessarily giving her Oxycodone. Twenty minutes later, she finally calmed down and was officially stoned off her ass. I know I shouldn't laugh, and I'm not (well, not really) but after everything that had just happened, even though it broke my heart to see her that way, it was a little funny. I was just happy she was finally calm and managed to have a good buzz about it too. I have a short video of it. She'll hate me 15 years from now for it. I'll get over it. For a good long while after Ativan kicked in, she was SUPER playful. She hung out in her crib and chatted up a storm, played with her toys, watched a little TV (can you believe it? lol), played s'more games on Daddy's iPad. Like I said, I hate that we have to sometimes calm her down with meds, but no one deserves to be left in such a fit of emotion, least of all my baby who already has ENOUGH happening in her life.
(A calm but very loopy Jocelyn)
She eventually got to sleep a little bit after that. All of the patients who were in treatment that day had left and we were the only ones there with the nurses so it was quiet enough for her to fall asleep and rest. Jack messed around on his iPad; I organized videos and pictures of Jocelyn that will eventually be shared with all of our faithful readers and followers....still covered in blood, mind you, because guess who forgot to bring a change of clothes with her to the hospital? I'm pretty sure I get violation points on my Mom License for that. I finally got to shower at 10pm last night. It was in my bra, in my hair, under my nails. I don't recommend that your kids bleed on you.
(Finally getting a little sleep)
Thankfully, we all got some sleep last night. Jocelyn was pretty tired today; the chemo is expected to do that to you. She was still under a heavy veil of Ativan for most of the day too. I think it was probably better that way because even if she was loopy and foggy headed, at least she was calm. I hate seeing her rage out, not because we can't handle it but because we just hate seeing her like that, knowing that she feels that way and almost helpless to help her get through it.
I'll tell you though, that girl is something else. She's so strong. Not in the "beating up Mommy" sense; strong in that since this whole crap started, no matter what she's had to deal with eventually she'll come up with a smile or a cute face or a warm snuggle for Jack or I. As tired and knocked out as she was today, she found ways to be adorable. Everyone's been telling me how kids are so strong and that they are SO able to bounce back from the craziest things. Well, I think my kid is leading the pack.
