I mentioned the other day that Gabby had a 9 hour appointment on Tuesday.
This is kind of medical-y, and detailed, so feel free to skip down to the pictures (or skip down to
Five for Friday, 'cause there's no running or cupcakes involved here).
Gabby has Acute Lymphoblastic Leukemia. There are 4 pieces of treatment for ALL - Induction (which included The Steroid), Consolidation, Delayed Intensification (which re-introdueced The Steroid), and Maintenance. We're in the midst of DI right now. Someone warned me, back in February, about DI - that Consolidation was okay, but then there's DI. And it pretty much sucks.
He was right.
Luckily, Gabby was not considered high-risk (nor was she low risk, but most kids aren't), so our experience with DI wasn't
as bad as it could have been.
I try, really hard, to keep a balance between recognizing how serious her condition is - she looks okay, and acts okay, most days, so it's easy to forget sometimes - and trying to maintain her "kid-ness".
I'm very lucky, that she has a dad that was able and willing to stay home and take care of most doctor visits, and that I have a job willing to let me take whatever time off I need.
Gabby was scheduled for nine hours at the infusion center (OPI), to kick off the last half of DI.
When I saw that, I was sure it was an exaggeration. Positive. How is that even possible, really? Nine hours? No way.
The H planned on going by himself, but that sounded dumb, so I took the day off to go with them.
Every OPI visit starts with The Cream. It's just a numbing cream, and it works pretty fast, so
in theory she doesn't feel anything when her port is accessed. Still, Gabby knows exactly what it means. The Cream means, her port is getting accessed. She doesn't really dig that.
One of Gab's new quirks, is that she's extra particular about what she's wearing. She likes to "accessorize" herself... and I'm guessing it's just a part of her trying to hold on to whatever control she can. All of these things happen TO her, and she can't stop them... but she can put on a headband, followed by a hat, followed by a hood.
....first kid in.
She knows the routine - she walks straight up to the reception desk for her bracelet, stamps our ticket for parking validation, waits, then off to check weight, height, and vitals...
(this is her favorite person at OPI - they have a routine down)
Her BP was pretty low, so double checking....
Off to the room, then port accessing time....
So, I've tested the cream, on my hand, and it does numb... but to be honest, I'm not sure how much of this she can feel. She certainly ACTS like it hurts, but I don't know how much it really does. It took me awhile to grasp what the port is, but
here's a link that explains better than I could. Right after I took this, I had to hold down her legs. She tried to snag that needle straight out of the nurse's hand.
Then, the procedure room. Gab doesn't really dig the procedure room, either.
Today's procedure was a lumbar puncture, with intrathecal chemotherapy... basically, they inject chemo (methotrexate) into her spinal fluid to treat any leukemia cells hiding there. She's given some sedation, and we're kicked out.
Just enough time to run down to the pharmacy and drop off some new prescriptions.
She's pretty out of it when she first wakes up....
True, that happened.
All of that, by 9:45am.
After she rests, and wakes up a bit, we're sent back to our treatment area.
Turns out, it was true - nine.hours. One of the drugs - cyclophosphamide - she has to be thoroughly hydrated for. Nine hours included IV fluids, testing her urine, more hydration, more testing, more hydrating, more testing, before the chemo could even be administered... followed by MORE hydrating.
All that, for this...
Sat around. Watched TV. Tried to get her to play, but she was having none of it. Brought her chicken nuggets, which were a winner. Watched more movies. Sat around.
Lily, one of the therapy dogs, came for a visit....
.....last kid out.
We got to OPI at 7:50, and left at 5:15.
