Thank You…


This is an open letter of sorts, a broad recognition because while one day I may find the time to personally write you individually today is not that day.

My guess is that since you were moved to donate you know our story…Rileys story. Be it the back story or the current unfolding it was enough to move you and that floors me. I keep a tight circle…my name is familiar to loads of different communities but my daily circle of interaction is close. My regular/non “baby in the hospital” life is routine and mundane littered with equal amounts lame first world problems, procrastination and laughter. Whether your gift was a monetary donation via Gofund Me, gifts cards, packages sent, food delivered, gifts dropped off, etc…it’s all been appreciated beyond belief. Because of you I have stopped stressing about parking, eaten, colored, read and last but certainly not least seen my girls eyes light up at the thoughtful presents…from stuffed animals to jewelry making kits to valentines balloons…they know they are on the minds of many (and sparkly stuff just helps) 🙂


Being here again I’m grieving not only Rileys illness but the opportunities I missed to help others during her health. These walls remind me that on the other side there’s likely a first timer or a child sicker or even more unfathomable than those scenarios…a child alone. My brain is constantly flooded with ways I can help/support/influence/ educate parents like us or children like Riley and has been for as long as I can remember but my action has lacked. I envy you…those who just take it. Those who so quickly act. Being in this situation again I’m disappointed in myself that I’ve spent so much time crafting these lofty plans in my mind as opposed to simply acting. My ideas or intentions aren’t serving anyone…yours did.

I’m not beating myself up I promise…I mean maybe a little bit in a healthy way. That being said I am baffled that so many are once again showing up to help…be it old high school classmates, acquaintances, friends of friends or even complete strangers…I’m in awe. You likely haven’t been sitting around for years like I have pouring over how you can best create a platform to assist the families of hospitalized children…but when you saw an opportunity you took action. You read, overheard, inquired or stumbled upon our trials and chose to be apart of the triumph.


This journey that we are on is going to be long. Life alteringly long. The hospitalization portion will end at some point but our daily lives will be forever changed…the “new normal” we’d crafted since leaving the hospital back in 2014 is no longer applicable. And that’s okay…I’m in…I love this little family of ours more and more with each complication but logistically I may scratch a hole in my head before I figure out how it’ll all work. I never had the notion that Riley would be a “normal” kid but I never anticipated this. No matter what portion of your hard earned income or precious energy you’ve gifted to us it’s helping far beyond your expectations. Scouts honor. With every donation I’m moved by the action, by the decency of the humans who’ve chosen to follow us and by the ability of others to so selflessly give.


I’m not only grateful but humbled and empowered to be more like you all. Life gives us lessons and apparently I missed something on the last go so in this retest I’m taking notes…I’m learning strength from Riley and compassion from you.

Thank you, thank you, thank you.


Gratefully Overwhelmed…

Gratitude is such an amazing emotion…it just wins. It’s overwhelming every other “feel” trying to sneak into my days. It’s not like rock, paper or scissors…it has no weakness. It can’t be covered, cut or smashed. It just wins…Every. Damn. Time.

For every known complication that pops up and all the terrifying unknowns this team of UCSF humans is working tirelessly to care for Riley. This is their job and they do it well. They do it with grace. They do it with love. They do it with caution. They do it with urgency. My child has never been sicker but I’ve never felt safer. For that I just…I mean…So. Much. Gratitude.

And then there’s our family…Chris’ parents and grandparents, my mom, my step mom , our brothers and all the other extensions all holding strong sitting on “Go” to take on anything we can’t. Gratitude.

And then there’s our friends…or the family we’ve chosen…Deena and Courtney have sat at my bedside almost every single night until the wee hours just waiting for me to need something. Because of their insistence and DoorDash accounts I am eating. Because of them I don’t smell like stale PICU pajamas because I can shower knowing that if Riley opens her eyes to them she will find comfort. Because of them I am breathing. Gratitude.

Michelle has kept a consistent stock of shortbread in my pantry and always manages to send me the perfect text at the perfect time whether it’s a reminder that she has me, a rant about breaking shit or a simple emoji. Tiffany made her mark with the most wonderfully inappropriate humor during a visit that has kept a smile on my face and a burst of laughter at the edge of my breath for days. I’m laughing now just typing this. Kelsey has taken her shift walking me around the blocks like a dog and will be tidying up my eyebrows soon. Meg spent an afternoon listening to me in 3 minute spurts between doctors and treatments and researchers and therapists…she followed the conversation and also captured the chaos with her lens. Mickey has just…well…Mickey…he’s my twin flame, my fiery mirror…my other side of the country husband who has a husband and is not actually my husband. Did you get all that? Gratitude.

And then Kate…oh sweet Kate. There is not a soul that knows Rileys journey like Kate. She’s done the things she knew I’d ever ask for…she showed up with food (and booze) when I said I was fine (I lied-she knew), she created a donation page and began helping ease the financial burden before I’d even had the headspace to add that level of stress, she’s apologized for her kid now being one of the “healthy ones” we had he urges to kick back in our isolation days and would actually let me kick Elsie if I felt it would serve me. Gratitude.

And then there’s Chris…actually he’s right up at the top but it’s only fitting to save the best for last. Everyday Chris is spending 3-4 hours driving back and forth so he can be present for his girls. All three of his girls. Mornings with Presley, days with us, nights with Presley. He is managing the emotions of all three of us beautifully…three women…high stress situation…he’s been a rock and doesn’t even know it. I’m just here…only playing one role…he’s beautifully juggling the rest which is something I won’t even pretend I could ever do. Gratitude.

Presley deserves her very own write up at some point and will get it…for now…all I can say is she is standing in the shadows casting light. So much light. Gratitude.

Countless others have sent texts and messages…packages and donations. And there’s no way to even measure the moments people have spent dedicating thoughts and love to us. Just an overwhelming outpouring of love. Because of all of these acts and humans and commitments and relationships and bonds she will get stronger. Bottom line..


Riley Update

For days…no gosh…almost 2 weeks now we’ve been telling her that she’s here to get better…that these humans are helping her feel better…that these painful procedures and masked strangers are making her better…all the while she’s not getting better. Day one…she couldn’t walk steadily on her own. Day ten…she couldn’t breathe on her own. That doesn’t sound like progress and I can imagine it hasn’t felt that way to her. I have this visual that the next time I stroke her and softly say “you’re doing great, this is going to make you feel better.” she’s going to rip the tube out of her throat and call “BULLSHIT”.


Just when I start to think that way…when I start to let myself imagine her frustration, angst or impatience I realize that it isn’t hers but my own. Not to say that she doesn’t have it but she’s just a better person than I am…than you too. We all kind of suck in comparison. She knows more than we do…the pain that we noticed weeks ago has likely been building in her for months. She is so in tune with her body, so open to enduring the discomfort of treatments and tools because she knows it’s necessary. It’s unreal. She’s like a super human…a tiny super human trapped in a body attacking itself. It’s Riley vs Riley in there and both of those little shits are stubborn. Who wins that war? Never mind…I know the answer. Our Riley does because the fight to stay is always greater than the fight to leave. Our Riley does because the hands that fixed her once are on her again and more determined than ever. Our Riley does because I refuse to have it any other way and who do you think she got her stubbornness from.


Our Riley is resting…has been all day and when she wakes she won’t move mountains she’ll climb them. Over and over.


Rest Riley Rest.


Riley Update

I want to write…I’ve been staring at my screen here for almost two hours…blank curser flashing blue reminding me that I have no clue how to feel about any of this. Every ounce of me is flooded…with fear, with love, with exhaustion, with gratitude, with anxiety, with prospective, with questions I want answers to and then answers I want retracted. Flooded. Thatta girl…I managed to write a few grammatically incorrect sentences but then zoned out on the fact that the blue curser flashing is synced up with the beeping of the machines in our new room.

Just when I find myself thinking none of this can possibly be real I realize that this is all that is real. This is our reality. And that reality is that those machines beeping aren’t just telling me that an IV infusion has completed or that her line is occluded or that something needs to be flushed. Those are the machines I’m accustom to…they’re familiar sounds, sounds that I learned to tune out 3 years ago in order to sleep. But it’s not 3 years ago Toto.


Riley was intubated on Saturday. These beeps…the current beeps sounding off with every flash of my cursor are coming from a machine that is keeping our daughter breathing.


There’s not a soul reading this that wouldn’t argue the depths of Rileys strength…that being said…at some point the true show of strength is knowing when you can no longer fight. She knew. The terror was real…more real than I’ll ever put into words but the relief was real too. We were warned that when she came off of the sedation she would likely thrash, struggle and attempt to pull at the tubes…I knew she wouldn’t. I think. Or maybe I just knew I couldn’t bare that and so didn’t give it the option in my mind. Either way she didn’t thrash…it was so clear that the solace we felt in seeing her chest rise and fall steadily once the tube was placed was felt in her as well. She needed the help…she was given the help…she accepted the help.

She is still fighting…still working hard…so hard that we’re having to actively tailor her treatment to force her to rest. (shocker I know). We’re closer to some of the “whys” still figuring out many of the “what nexts” and clear headed enough to know that there’s no room for “what ifs” but for now none of that matters. All that matters is her breath.

Processed with VSCO with 2 preset

She will get through this but she needs every ounce of support…via cords, via humans, via prayers, via sleep, via ventilators, via positivity, via whatever it is you feel moved to do…light a candle, share her story or just take a really big deep fucking breath and be grateful for every bit of it.

I was right…I love her more today and I’ll love her more tomorrow. Breathe Riley Breathe.

** Special thanks and insane amounts of gratitude to my dear friend Meg Perotti for spending an afternoon letting me unload and sneaking in captures of our harsh reality in such a beautiful way.


1 Year Post Transplant

Riley came into this world July 15, 2014 and on October 9th, 2014 she was given the chance to stay in it. Today marks her first “Lifeday” as it’s often referenced in the transplant world. One year ago my cells made their way into her tiny cord covered body and we all held our breaths for months after waiting for her immunity to come. The procedure itself was anti-climactic but every moment with her since has been anything but. There is not a second that goes by that I am not forever grateful for the amazing team of doctors and nurses who cared for not only Riley but the rest of my family as we endured 6 months of hospital life. Every ounce of my being is changed because of the life that Riley has lived, I often think of how different our outcome could have been and shudder at the thought of anything other than the healthy girl she is today.

I never read what I’ve written in the blog…over the past week I’ve pulled it up a couple of times while reminiscing about her chemotherapy with the intention of scanning my words. This time last year was so hard…hard enough that when I tried to re-read I couldn’t. I’m tearing up just thinking about my failed attempts in fact. I got a few sentences in and it all felt too heavy, I’ve learned that when things get heavy…Put. Them. Down. So I did, I do. This morning I decided to forego the chemo blogs but click on my post “Transplant Day”…I needed to read that one…I needed to be catapulted back to that time when I was so unsure to really appreciate how far we’ve come.

“So here we are…transplant day. October 9th…exactly 2 months after we arrived here at UCSF. This is the day we have been waiting for, this is the day that her little system resets, this is the day that marks another new beginning for us. I am a bundle of nerves, this has to work…it just has to. I know it will but I need everyone and their mother behind me today knowing it will too.”

It worked. She’s here. She’s Home. She’s Healthy. Thank you for being behind me that day and every day since.


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.


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.


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.


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.


You know when you see those little articles with catchy titles like “56 Things That You Get As An 90’s Kid”?…they float all around on facebook and you click on them because it’s sure to throw you back in time…You read a line like “Bath and Body Works – Country Apple” and immediately can smell it in your brain. You reminsce get a good chuckle and move about your day trying not to think too much about how much time has passed because that makes you…wait HOW OLD?!…nevermind. Anyway…quite often situations arise for me that get put into a hypothetical article titled “56 Things That You Get As The Parent of a Sick Kid” I knowI know the title isn’t quite as catchy but hey it’s all I got. Two  of those things happened for me this week.


No. 1…The name of another parent with a sick child pops up on your incoming call screen and your heart drops because you automatically think…”oh my god what happened.”


Yeah…that one happened Monday…I hastily answered to Kate sounding frantic…”Where are you?” she says. Immediately I’m getting out of my chair ready to head out the door and drive as fast as I can to her…”In my office…WHY…whats wrong?!!?” “Nothing nothing nothing…I’m here at UCSF and Jess told me you had an appointment so I thought you were here!!!” Oh. My. Shit. Deep breath…sit back down…scold Kate for scaring the bajeezus out of me. Once you’ve had those moments with someone…those terrifying calls you never really recover. Kate and I were all each other had at the hospital everytime the other got bad news. As you may recall poor little Riley got every damn infection under the sun and every time Kate was there…glass of wine in hand, arms wide open, spouting off some genuine reassuring shit. I flat out could not have gone throw those months without her. We briefly chatted but seeing as she was with Elsie at clinic it wasn’t exactly an ideal time to catch up. We quickly summed up how each others so called “normal” lives were going said I love you and hung up. Thing is even after the disconnect my racing heart was still trying to catch up to the fact that everything was FINE. Elsie was FINE. Kate was FINE. I was…not fine. I mean…I was. It was a surreal moment…in that one split second I was prepared to be catapulted back into the nightmare but then was jolted awake to the reality of “go about your day”. My own personal roller coaster.


No. 2… You notice something white protruding from your 11 month olds gums and without hesitation throw on a latex glove to inspect what you think is a mouth sore.

Hey dumb ass…it’s a tooth. Yeah…that happened. Chemo was MONTHS ago yet that’s still the first place my mind instincually goes. I was instantly back in “Nurse Mom” mode, it’s amazing how I can feel myself shift between the roles and how without skipping a beat I’m back in the uber calm emergency zone. No sores…just a serious flashback…guess that’s what that whole Parental PTS business is all about. Whoops. Getting to the main point (which isn’t that I’m nuts) Riley popped another tooth!!! Oh and not just one tooth…girl popped FOUR top teeth in a matter of 2 days. I sat back as she giggled at me inspecting the new additions to her smile. What baby pops 4 teeth in 2 days and doesn’t skip a beat? No fever, no redness, no puffiness, no runny nose, no fussiness, no restless nights…nothing. A baby who has been through some serious fucking pain that’s who. That reality stung. Bad. Hard. As I watched her wriggle out of my reach that overwelming sadness/gratitude combo flooded me again. This girl is amazing. I am so in awe of her. I am so sorry that she ever had to experience any of it. So broken that my baby eases through what keeps others up at night because to her it is nothing. Nothing.  After more medications than I care to remember, the gnarliest rashes you can imagine, countless blood transfusions, 4 different types of chemotherapy, a stem cell transplant, infection after infection, 2 surgeries and good god knows how many other uncomfortable tests/procedures…why would I think a couple of teeth would phase her? She’s been a trooper…through all of it. Go Riley Go.