Riley Update…

August 9th marked the 1 year anniversary of Riley’s admission to the hospital. 1 year. Holy crap. In so many ways it feels like this year has flown while in others I have a hard time recognizing the person I was before any of this happened. On the 13th Chris and I took Riley up to UCSF for her rountine (every 6 weeks) check in with the BMT team, as we walked towards the hospital my gaze made it’s way up the building to the windows of our very first room. Deep breath. Wow. In that moment I felt everything, just one year earlier I was up there…in that room…scared out of my mind only 4 days into a journey who’s ending was so unclear. I remember staring out those windows watching hoards of people scurry back and forth in the cross walk wondering if I’d ever get to cross that street with Riley again. Unsure if she’d ever see the outside of those hospital walls. Peering up at those windows I longed for the ability to catapult back in time and tell my past self that everything was going to be okay. I wish I could have shown her what the other side of this all looked like. If I could have just pointed and said “Look there we are…down there…see Daddy’s holding Riley…she’s out there, unmasked, cordfree, healthy…that’s Riley, that’s us…she’s got this, you’ve got this.” Oh, if only.

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Our appointment was seemingly routine…with the only big change being Chris and my desire to move all of her future infusions to Kaiser Santa Clara as opposed to driving all the way to UCSF every other time. Kaiser is just so much closer and more mangeable, part of us felt kind of silly…in the grand scheme of what we’ve been through these every 3 week visits aren’t a big deal but nonetheless they are draining, gas is expensive and bottom line is in life if you can simplify…do that. The doctor totally agreed and had no problems with that but did say he was hoping that she wouldn’t need the IVIG much longer…they were resending out B-cell function again and were hopeful she’d be where she needed to be. Yeah, okay doc. We both just kind of brushed over it, I mean the hopefullness is always there but we really didn’t put much thought into the possibility. I mean come on…if you’ve been following this long you remember the roller coaster of the T-cell function testing. If I have learned one thing it is that lil Miss Riley takes her sweet ass time when it comes to healing but she does it with grace and most importantly…she does it. We left the appointment happy that all with her seemed routine, no one had any concerns and infusion life had been moved more local. Sweet.

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The next day I got a call from UCSF…as you can imagine seeing the hospitals number pop up on my screen is never comforting. Even this far in…I still take an incredibly conscious deep breath prior to answering. Just. In. Case. “Hey Alissa, I have great news”…sighhhhhhhh…..I let all the air from my big gulp breath out and sit up a little taller in my chair. “Oh yeah, what is it?!”

Doc-“Riley’s B-cell function came back…she’s working…her B-cells are working. She no longer needs IVIG.”

 Me-“Holy shit.”

If I’m known for one thing at UCSF it’s probably my wildly innapproraite yet honest repsonses. I mean what else do you say?! OMG. Oh. My. God. She works. Entering doubt in 3….2…..1…..”Are you sure?!…like….really sure…I mean…she works….you’re sure?” They were sure. All future orders of IVIG had already been discontinued. She’s done. She’s…here it comes…wait for it…NORMAL. Yeah, yeah…normal my ass but healthy I’ll take. She is considered fully recovered, immune reconstituted, a real life best outcome SCID baby. I immediately called Chris…his response…”WHAT?! Are you sure…I mean, did they read it right…remember that time we thought the T-cell was there but it wasn’t…I mean…WHAT…you’re sure?” Great minds think alike. Guess it’s safe to say we have a fear of getting our hopes up. Weird, right? 😉 I did call back…you know…just to be safe…over the next 4 hours 3 different people called to assure me it was right, she works, she’s done. No more IV’s, no more 3 weeks visits, no more. That day we celebrated in the most appropriate way I knew how…we took her to swim for the first time. In a pool, a public one. Why? Because she can.

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Clearly it’s taken a while for this to sink in for me, I’ve learned to not force myself to digest things all at once but rather honor the process and respect the time it takes to swallow news. Even good news. Good news is sometimes harder…sometimes scarier. On Wednesday my calendar alert went of “Reminder: IVIG at Kaiser” Tears. We didn’t have to go. It sunk in.

Go Riley Go.

Yesterday was good. There was nothing spectacular about it, it was just good. I woke up and decided I was going to be super patient with myself, with my tasks, with…whatever was going to come my way. Yes, my first pep talk of the day was before 7 a.m. Don’t judge. I snuggled with Presley, just the two of us. I relished in it, I told the voice urging me to “get up and do something” to mind it’s own damn business. Take that. When Riley started squawking from her crib, yes she squawks…still no crying from that kid, she wakes up giddy and ready for each day. I swear she’s exclaiming “listen here folks I worked HARD to be here, I’m not taking this sunshine for granted!” I picked her up and squeezed her tightly, every inch of my being trying to soak up her energy, her sweet essence. That girl is grateful, it shows, it seeps through her often patchy pores. Everyone reading this has seen enough of her smile to know there’s something behind it. She does rub off on me…every morning, afternoon and night…that grin…it gets me. At 6 a.m. it’s better than coffee (which I can no longer drink due to the affects of caffeine sky-rocketing my anxiety). It’s an instant reminder of those days when the only thing in the world I wanted was to know she was going to be ok…I remember bargaining with the universe, begging, pleading, knowing whole-heartedly that as long as she made it through I could handle anything. That grin. It takes me back. It’s a grin that says “remember Mom…you said it…I’m here, I held up my end of the bargain.” I am so proud of her, so in awe of her strength. Almost daily I wonder who’s really the baby in this relationship. Am I raising her or is she shaping me?

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Lately as I’ve found myself wading through the heaviness of the past 9 months I worry that they can feel it. That the girls feel my sadness no matter how much I try to conceal it. In the hospital I was so strict with myself on ensuring that I stayed positive because I was all Riley had. It was just us in that room and I would be damned if she was going to bathe in negativity or worry. But now I wonder if I slip. I’m not in that “crisis-mode” where my only real job was just to take care of her. I now have Presley, work, housework, relationships, bills…reality. You know, normal life stuff. Oddly, it’s more to balance. I think I do good, in all reality when I am with them I don’t really feel it. It waits for when I’m alone. The “it” being the struggle, the weight. Yesterday morning the girls and I walked down to Starbucks…Presley lusts over their muffins and since I decided I was taking it easy on myself I thought what better way than to just be a Mom. Downtown Willow Glen is chalk full of stay-at-homes clad in lulu pushing overpriced strollers with a 5 dollar cup-a-somethin’ in their paws on the daily…saddle up girls, let’s join them. Off we went. It was great. Presley laid claim to a table outside and scarfed down her carb load while donning her finest princess nightgown. Riley as per usual sat quietly in the stroller. She clams up quite a bit when people are around. We got a lot of comments from strangers…Presley’s hair alone sends passerby’s into a frenzy and of course everybody loves a chunky baby so the company I keep is gold. Half the time I’m comforted by the unknowing comments of “what a sweet baby” it’s so amazingly strange to me that to look at her you’d never know anything was ever wrong. She looks perfect. Failure to thrive my ass…girls a beast. The other half of the time it stings…it’s so silly but I feel the urge to correct them, to make them aware that she is not just “a sweet baby” she’s a freakin miracle rockstar that battled her way through chemo and a stem cell transplant while they were making plans for the neighborhood Halloween party. You’ll all be happy to know I’ve never actually gone off on a rant to a stranger. Proud? The outing was bittersweet…99% sweet…the bitter may have just been the shitty taste the decaf Starbucks brew left in my mouth. Man I wish Presley liked Peet’s muffins. Anyway, it was good. I felt refreshed. We strolled home and I got to work. I had a productive day. I didn’t feel so trapped, nothing felt forced. I got more done than I’d expected and my heart never made attempts to leap out of my chest. Success.

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After the girls were asleep I decided to tackle a project. To do something I used to enjoy but haven’t done in oh so long. It involved an outing to the craft store, uh-oh alone…public. Damnitt. Can I do this without crying? Worth a shot. Presley (like all girls under 4 feet) is OBSESSED with Elsa from Frozen. She NEEDS an Elsa dress…her words, not mine. They’re sold out everywhere and I have no intention (nor funds for that matter) to blow hundreds of dollars on Ebay on made in china polyester covered in glitter. I used to love sewing, especially making Presley costumes. I made all of her Halloween costumes. Up until this year. Ugh. I still hate myself for that. I just couldn’t do it. Oh well. I figured sewing could maybe serve as a therapy and Presley could get the Elsa dress she “NEEDS”. I conquered the fabric store without a single tear shed, woot woot. My sewing machine and I have a love/hate relationship…I opted last night to leave it tucked away in the attic. I might become over the top frustrated if it didn’t cooperate (even if due to operator error) and since “relaxation” was the goal here I stuck to hand-stitching. It was nice. I got lost. It was great. I felt like a normal “Mom” again. My kitchen island looks as though a stripper with a serious love for aquamarine glitter danced on it all night but nonetheless…I was relaxed and Presley’s snow queen gown is that much closer to existence.

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Tonight I wrote. Good for me, two nights in a row I have consciously forced myself to “do something for me”. Progress.  What’s that little fish say? “Just keep swimming…just keep swimming…” xoxo

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.

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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.

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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.

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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

GoFund Me:

http://www.gofundme.com/3x0iig

Amazon Wish List:

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Target:

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