First a big fat apology for the lack of update but in all honesty it was for thoughtful reason. All last week I kept waiting for them to come in and deliver me some good news so I’d have that to break my silent streak but as the days went on that moment never came…instead the bad news deliveries arrived as though they were freakin scheduled. Saturdays delivery…Riley went ahead and picked herself up another hurdle in the form of the Rotavirus, a nasty tummy bug that most little babes have been vacinated for but since she came to us immune system-less she had to skip that set of shots…fast-forward to a few months later and here she is infected with it. Shit. Literally. A week into this and I do declare that Rotavirus is a fancy term for “poop soup” because that is all thats been in this girls pants. TMI? Sorry. Count your lucky stars this blog isn’t scratch and sniff. They were a little vauge about the severity of this virus the first couple of days and I couldn’t quite figure out why, it was like they wanted to say to me “it’s not really a big deal” but couldn’t form the words. Well…here’s why that is. For where Riley’s counts currently sit the Rotavirus isn’t the end of the world however should she now develeop Graft vs. Host or pick up any other sort of infection that requires antibiotics, steroids or any other treatment that lowers her counts we could be moving from the cool end of the pool to the hot water side pretty quickly. Make sense? Sooo yeah…baby girls system is at it’s max. We need no more hurdles, challenges or battles to fight…we’ve got enough so shove the rest of them up your ass universe. Please and Thank You.
Mondays delivery…well…my sweet request kindly went unanswered when her lab results for CMV came back positive. Grrr. Same as last time, they’d lowered her dose of Ganciclovir to once daily and after a week of that the CMV popped back up. Our plans of switching her to the oral form (which isn’t as hard on her system, counts or T-cell function) went out the window. While the Ganciclovir does a helluva job at slowing down her count increases and T-cell function (not good) it has proved to keep the CMV under control (good) that’s the virus that can take over and become a total game changer for Riley. I so badly just want that one to go away…it’s like this evil lil gremlin perched in the back of my mind, a constant reminder of how fragile she is. Riley’s syndrome, illness, disease, deficiency, whatever the hell you want to refer to it as is such a balance of meds to progress…the meds keep her from getting sicker but slow her from getting better. Annoying, right? Everyday we are in a catch 22, stuck between a rock and a hard place and every other metaphor you can think of for “shit situation”. They’re going to try a different medication this week…it’s another twice daily that will be administered through IV, hopefully it will be effective in keeping the CMV at bay but not hinder the counts/function so much. Stay tuned.
Last but not least for the not-so-good news train…we got word that her latest T-cell function test came back and still no improvement. So there it is. Rotavirus. CMV. No function. Ho ho ho. How’s all that for holiday cheer, huh? Pretty sure this time last year my stresses went something like this “Ughh…I procrastinated on shopping and now parking at Target is going to be a bitch.” and “should we open the good wine or the REALLY good wine first?” Huh…there’s that perspective thing again. 😉 While I in NO way welcome all these real big issues we are facing this year I do find myself appreciating the gift of “don’t sweat the small stuff” that I’ve been given.
Last week was certainly a long one…between all of that happening and then not being able to go home over the weekend to see Presley…it was one of the toughest in recent months for sure. Luckily I was able to head home Wednesday and enjoy a few days of that wild 3 year old and a few nights of beeps/vitals free sleep. That re-charge was much needed. Now all I need is some good news for little Riley…even no news, that I’ll take as well just no more bad. With all that is going on in her little body she’s still been relatively unphased. Energy levels have been a bit lower during the day and she definetly has a harder time sleeping at night on account of her grumbly tummy but other than that she is her happy self. Shocker, right? This baby can smile through just about anything…you really wouldn’t think it possible for so much to be wrong with her on the inside when her exterior is so damn adorable. I sure wish her smiles were a sign of improvement but I think we all know that if a grin was enough to get us out of here we would have been turned away upon arrival…4 months later, 4 million times cuter. Still. Here.
For those of you with a little room left on your Christmas list this year please feel free to add “functioning immune system for Riley”. Hey, worth a shot right? 😉 I will do my best to update again soon and hopefully this time with some “woo-hoo” news. Thank you all again so much for constantly keeping Miss Riley and the rest of our clan in your thoughts. xoxo.
For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com
Thank you, thank you, thank you
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