Riley, Riley, Riley

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.


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Chemo Day 5

So here we are on day five just rolling right along. Riley got her last dose of Busulfan overnight and while she tolerated it wonderfully I am glad we are done with that one. She received Busulfan every 6 hours (9 a.m.-3 p.m.-9 p.m. and 3 a.m.) for 4 days.  Along with the evening dose at 9  came the pharmacokinetic studies which is a fancy term for blood draws. They monitor the levels of the chemo in her blood to follow how her body metabolizes it and adjust the dose so she receives the exact amount they desire over the course of her treatment. Blood would be drawn 15 minutes prior to the chemo, 15 minutes after, 30 minutes after, 1 hour after, 3 hours after and then again at 6 hours after.  I’m sure that clears up any doubts you had about my lack of sleep 😉 She is a champ…she would sleep through the chemo and the studies, Mommy however not so much…with all the beeping, footsteps, rubber glove removal and door closing there really is little point in even attempting. The nurses are so wonderful, I don’t want to sound like I am complaining…I am not by any means, just giving a glimpse of what this lil party we’re attending has been like.  Along with the chemo itself she receives additional meds through her IV…everything from anti-seizure infusions to Zofran for nausea and Benadryl to help relieve the itchiness caused by her rashes and that is just to name a few. On top of those she is still putting down between 3-5 oral medications daily. This lil baby is chalk full of all sorts of goods and handling it like a pro.

Photo courtesy of the wonderful Meg Perotti


Today she started the second phase of chemo…phase one drugs made room in the marrow for donor (my) cells  while phase two drugs begin killing off the current cells in her body. I’m sure you can guess that phase 2 is likely to be a bit more uncomfortable for little Riley. The upside is she only gets chemo twice a day now and the blood draws are minimal. Fludarbine and Thiotepa and are the two drugs she will be receiving now. The Thiotepa excretes through the skin and so protocol will be to bathe her 3 times daily to get the chemo off of her skin as it can cause burns. Luckily for all involved Miss Riley LOVES bath time especially since my dear friend Courtney hooked her up with a big comfy tub and towels last week. Hospital textiles are simply atrocious. 😉 Bed linens will also be changed with each bath to reduce the spread. So basically our days now will be eat, poop, bathe, groan, giggle, sleep, repeat.


Life down in the PCRC was pretty uneventful, she had some oral meds and vitals twice a day but for the most part it was all down time. There is not really any down time now that treatment has begun. Besides the IV and oral meds there are the creams…oh the creams. This kid has got the cream regiment of a hollywood housewife I swear, she’s got a cream for every little bump, blotch, crack and crevice. Desonide twice a day on all rashes, Bactraban on her back 3 times a day, Bacitracen on any open sores as needed, A & D ointment on top of all of those to seal, hydrocortisone and desonide on her face as needed and then there is her booty regiment which evolves daily depending on how her diaper rash is doing. IV meds-check, oral meds-check, creams-check…oh yeah then there is the mouth swabs to be done 4-6 times per day to reduce the discomfort of the mouth sores caused from chemo and also those multiple baths , bandage and linen changes. I’m telling you we’re busy around here folks 🙂 The beauty of it all is that she is only 3 months old and knows no other way…to her life is Mommys undivided attention plus tons of friendly faces oohing and awwwwing at her around the clock…not too shabby from her perspective.

Riley’s current state as I update 😉

After today we only have 4 more days of chemo then a day of rest and that takes us right into transplant day. We are getting so close. I continue to thrive off of the support we are given on a daily basis, thank you all so so much.

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Chemo…Day One

Little Riley started her chemotherapy today in preparation for transplant on the 9th. All day I’ve thought about her birth…the contractions at home, the ride to the hospital, the excrutiating pain and then the sheer bliss. It was the single most painful yet magical moment of my life. Holding her this afternoon as the chemo made its way through the cords covering her little body I closed my eyes so tightly I could almost feel what it was like holding her for the first time. Ten fingers, ten toes, no complications…she was perfect. I had no idea what was to come and I wouldn’t for weeks. For 3 short weeks I had everything, I had 2 beautiful healthy daughters and they were both more than I ever could have hoped for. SCID turned my dream life into every mothers nightmare. I long for those moments back. To clarify…that same little baby is STILL perfect, the blip in her genes does not change her perfection…she is perfectly Riley. For whatever reason this happened, for however long this is her life and while I could have never expected that this would be the life I would bring into the world, I did and I am so lucky she’s mine. I am so lucky I get to guide her through this, so lucky I get to love her deeper than I ever thought possible, so lucky I get to be her Mom.Image