All So Real Real

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.

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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.

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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.

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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?

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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.

 

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2 thoughts on “All So Real Real

  1. Alissa, This just breaks my heart. I am one of those ‘strangers’ who is following this story. Well, I met you once because you used to work with my daughter Shannon. And, I hope you don’t take this the wrong way because I think you and your husband and Riley’s medical team have done an amazing job at caring for her. And, I don’t have any experience with an issue as serious as what you all are going through but because of my husbands health issues for the past 10 years we have been researching & educating ourselves on health, healing and Autoimmune Disease. And, he is finally on the road to recovery and getting his life back. But we have made a lot of changes. Eating a grain free, organic, Paleo diet. Eliminating chemicals from our personal, laundry, and cleaning products. With all of the drugs that Riley has been on and exposure to hand sanitizers, etc. I think that she probably has a leaky gut and that her microbiome is disregulated. I also wouldn’t be surprised if she wasn’t sensitive to gluten and casein which can cause autoimmune issues. It’s not that I don’t think you have a great team but regular physicians usually don’t learn in depth about these things. Their education is focused in a different direction. If you could find a Functional Medicine doctor that could work with Riley I think it would be very beneficial for her long term health. I have read so many things where people cured themselves from diseases like MS, Lupus, Diabetes – all autoimmune problems simples by changing their diets and reducing the toxic load on their systems. I am wishing Riley and you and your husband all the best. Sincerely.

  2. GVHD–after all this time–WOW! Miss Riley Jane is strong and her family and her medical personnel are the best support team ever!!! You all will prevail over this 😘

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