She doesn’t say “for real real” anymore…I’ve tried to get her to…but she won’t. Maybe it was a phase that passed during our weeks here, like when they all of a sudden grow out of mispronouncing words or maybe everything is just way too “real real” for her now that it’s lost its charm. I get that.
There are big moments during our days now where she is Riley…our Riley…she laughs, talks, colors, plays with princess toys, whacks us endlessly with her balloon and smiles. During those moments she knows exactly where she is and is still able to enjoy.
There are other big moments for her filled with frustration, terror, annoyance and anger…steroids are NO joke y’all. During those moments she also knows exactly where she is and is pissed. Her distaste for the nurses and doctors goes from zero to sixty real quick, her appetite insatiable, her patience non existent and her ability to control her emotions just flutters out the window of our 6th floor suite. It’s like a bonified glimpse of puberty. Resisting authority while angrily eating hunks of chocolate soaked in tears…yup sounds like teenage years.
It’s brutal. And then it’s beautiful. And then it’s brutal again. All day, everyday. All night, every night. She’s so resilient…I’ve thought for sure after episodes she’s had that she’d never speak to me again but not 2 minutes passes before she sweetly spouts off “mommy you wanna color with me?” Ha. Sure baby…let me just peel myself off the ceiling real quick. Outwardly I channel her resilience plop in bed with her and color…inwardly I’m still stuck to the ceiling like the petrified cat you see in the cartoons looking down at the two of us screaming “WTFFFFFFFF?!?!?!”
We do have the answer to our overall question. The what. It’s graft vs. host disease. It’s not “normal kid stuff”…it’s complicated, so damn complicated. It’s not the virus we’d hoped for it’s her T cells…(well my T cells if you wanna get specific) that are doing this to her. Attacking her muscles. Stealing her ability to function. For whatever reason 3 years later those cells that gave her immunity have now decided that her tissues are the bad guy. Rude. Infuriating. Confusing. Yup. In true Riley fashion none of her symptoms are presenting like classic chronic GVHD so while we have “an” answer it’s left us with about 3 billion more questions. The main being …what next? For now it’s steroids…piles of steroids followed closely along with a medication that will hopefully wipe out the T cells and allow us to taper down on said steroids. That’s all happening alongside a whole host of other prophylactic antibiotics, blood pressure meds, pain meds, etc…We’re also still waiting to see how her lungs progress, if her eyes are involved and why her heart rate is through the roof for seemingly no reason. Next question…then what? I don’t know. Follow up questions…What if that doesn’t work? I don’t know. How long will we be here? I don’t know. Will this happen again? I don’t know. Why did this happen? I don’t know. Will she regain all of her movement? I don’t know. Insert next question here____________) likely answer…I don’t know. You see a pattern right?
Needless to say we are nowhere near out of the woods but at least we’ve found he forest. Thank you all again for the love, gifts, messages and donations. Every bit is keeping us going.