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.

5 thoughts on “Riley Update…

  1. We have never even met and yet your daughter’s joyous smile, your amazing use of words to describe the indescribable and your photos of your beautiful family…on a journey brings me to tears! CONGRATULATIONS! To all of you….May this healthy journey continue! Thank you always for sharing. 💕

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