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

And we wait…

Monday was the 9th…just another day but the 9th is a marker for us, we arrived here to UCSF August 9th and Riley recieved her transplant October 9th. Quick math, yup…4 months in the hospital, 2 months post transplant. Jeez. It is amazing how time can stand still while flying by. So much of me is stuck back in August but the snowflake decals kindly placed on our door by hospital staff remind me that the seasons indeed have changed. Twice actually. Fall happened. Winters happening. The seasons don’t wait…the outside world doesn’t stand still but we do. I look at Riley…she will be 5 months old on Sunday and we don’t get those months back. I’ve said from the beginning that the minute we walk out these doors she should revert back to a 3 week old baby, she has overcome so much and worked so hard she really should get all the time back. A do over ya know, a chance to just be a baby…a healthy one. I want to see her grab again for the first time but it be her sisters curls instead of her broviac cords. I want to be able to ease her into tummy time again but this time on carpet not this cage we call a crib. It’s only fair, right? Fair…huh. That’s an interesting concept, I don’t even know what that means anymore. Last week the opthamologist came to check Riley’s eyes for CMV, it’s a routine thing for us that involves her eyes getting dialated (not fun) and a really fancy set of headgear worn by doc that she’s pretty fascinated by. It was a different doctor this time, one we’d never met…he asked how old she was…”almost 5 months” his response…”Congratulations.” Whoa…that’s not something I’ve heard very much. I mean that is the go-to salutation for a women with a baby but ”I’m so sorry” has been the more common theme. It hits me every once in a while in those moments…oh yeah I had a baby. But just 3 weeks into life that baby quickly became a patient and “congratulations” was no longer peoples “go-to”. I am sure that will not be the last time that I get a reality bubble burst in my face, sometimes I think they are necessary though to remind me that this little “Life of Riley” many of you have followed and fell in love with is also just my baby.

 
So…about that baby…well…the results of her T-cell function test came back yesterday. Still no improvement. I mean…I wasn’t surprised, I wanted to be but I wasn’t…I knew the function wasn’t there, I can’t explain why-Mom sense strikes again. Discharge discussions once again pulled off the table. And. We. Wait. While nothing can speed it up there is a whole lot that can slow it down so the goal is to avoid all or as much of that as possible. Her CMV did come back undetected for a second week in a row and so the Ganciclovir has been pulled back to once a day. In the coming weeks we want CMV to remain undetected, Rhinovirus to kick rocks, T-cell function to kick into gear and Graft vs. Host disease to skip us here in room 722. It is not ideal but we can wait…we’ve made it this far and as much as the end is trying to escape us we will catch up. For now we have a bit more time to prep the house, work on fundraising efforts to ease our ever-expanding costs (any ideas wanted, welcomed, appreciated) and continue being thankful for every single day that Riley is flashing that gummy grin. Positive thoughts, prayers, good vibes, rain dances, juju, holiday magic and all that other jazz…keep it coming. Thank you all…so so much. 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
Amazon Wish List:
http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST
GoFund Me:
http://www.gofundme.com/3x0iig
You can also follow Riley’s journey on Facebook:
https://www.facebook.com/rileyjanebrown?ref=hl

The up, down, up, down theme of my previous post graciously decided to continue it’s trend last week …so much so that everytime I was given information I felt it premature to update. It was like…yeah ok…let’s give that a minute and if it’s still the case in 2 days then it’s post-worthy. Those T cell function test results that we were waiting on came back…well…results came back but not the ones we wanted. “The test showed no significant improvement.” Shit. When I asked what “no significant” meant it became clear they threw that word in there as a bit of a buffer…just sounds a better than “no improvement”…thanks guys. So that started the week with a down, then there was an “up”=engraftment is at 100% (great), then down= looks like she has a possible urinary tract infection (ouch), then up= CMV was undetected at this weeks lab draw (yay), then down=ANC dropped to 700 so another dose of nuepogen to boost cells (sigh). Mix all of that with 2 nights of less than 3 hours sleep, a sick Presley at home, a car that won’t start, a mound of pending paperwork taller than any Americano that the 2nd floor Peet’s has to offer and yeah…deep breath time.

It’s all so surreal, most of the time I look at Riley and she looks and seems so healthy on the outside…it’s sometimes hard to wrap my head around the fact that all that jazz is going on inside of her. The doctors are having the same feelings as well, it’s driving them nuts. She just looks so good and has done so well in the grand scheme of things that they feel like it should be working and by “it” I mean her immune system. So much so that they re-sent her function test immediately in the hopes that maybe the lab made a mistake. They have continued possible discharge talk as if those results were wrong…while I’d love to go home and it would be just swell if that no function thing was the result of some lab error it’s hard for me to put any real clout behind that. Keep in mind the last time I was told “sometimes the lab makes mistakes” was back in August when I got that first phone call…we all know how that turned out. No mistake. As I did then I’ll go ahead and hope that a whoops on their part is going to end up working in my favor but…well…we’ll see.

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As far as day to day Riley goes she really has been all up’s this week…weights up, spirits up, curiositys up, cuteness way up. Her rolls have reached uncontrollable levels…they are out of hand, it’s amazing. She no longer despises tummy time which is a plus…she thinks she’s pretty hot shit holding her big ol’ noggin up looking like a little chemo-baby bobble head. She loves to sit up and is way to close (in my humble opinion) to being able to do it on her own… surprise surprise I’m not exactly ready for her to be that grown up. And food…man that girl has taken a major interest to everything that I eat. She tried nose diving into my mouth when I was devouring a hunk of Trader Joes Extraordinary Bark (which p.s. if you haven’t experienced stop reading right now and go get some…thank you to the lovely PCA that brought it to me and you’re welcome to those that head my advice).You forget about those normal little baby milestones with all this other stuff going on but yeah…turns out food is definetly on her radar so pretty soon those thighs may get even more of a boost. Please keep that positivty rolling in for us and hopefully this week will be a little more restful, peaceful and stable. 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

Amazon Wish List:

http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST

Target:

http://www.target.com/RegistryGiftGiverCmd?isPreview=false&status=completePageLink&listId=tpSUFAcTqQR_bAvBC_xDKQ&registryType=BB&cumulativeTime=-1&isAjax=false&noOfPings=

GoFund Me:

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

You can also follow Riley’s journey on Facebook:

https://www.facebook.com/rileyjanebrown?ref=hl

Last week when I wrote the post about possible discharge I stared at it for a good 20 minutes before hitting “publish”. It didn’t look right, not because I didn’t like my writing…I don’t re-read or edit what I write and I think thats probably pretty obvious (apologies now for any and all curse words, poor grammar and typos) but it was just because…just…I don’t know…discharge? It didn’t feel right, didn’t feel real. All of the events that have followed with Riley have shown me why. She’s just not ready. I think for a minute the much welcomed good news and excitement got the best of everyone including the team and the classic “doc who cried discharge” fabel consumed us. From the beginning it has been a CONSTANT effort for me to remain positive while also knowing the beast that is this disease is so unpredictable, so ugly and so unknown that plot twists are just bound to happen. It is a rollercoaster…she generally feels good 90% of the time but then there’s that 10%…those moments that you look at her and just know, she’s not ok. She has those moments just long enough each day to let us know that she is not ready for all that the big bad world has to offer outside of these walls. You think I would have learned to listen to my “mom-sense” a little more and maybe hold off on putting the D-word out there but part of me felt like it was just my own denial issues. Whoops. Here’s my big dilema…I’ve made it my mission to keep people upbeat and cheering for Riley and I don’t want the fact that discharge is off the table for now to feel like a huge setback. It is not. It was said too early, bottom line.

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Hear is what I ask if you’re following along with Riley’s story…buckle up. There are going to be up and downs, days that we feel like we’re leaping forward and days where the wind gets knocked right out of us. It is a long road. Even when we do get discharged we are not in the “clear”. The isolation at home will be  more rigid than it is here at the hospital and even just one fever spike and we’re right back at admissions. Please just continue cheering for Riley, sending good vibes and knowing that even during rough patches she is a total badass.

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Riley has definetly felt better this week than last. I do have one piece of really exciting news…her CMV labs for this week came back and the levels were undetectable!!! CMV has been that constant fear lurking in the background and so hearing that they don’t see it in her anymore is just such wonderful news. They are going to continue her on the ganciclovir for at least 3 weeks and continue re-testing every Monday to be super sure that it is gone. Also, because she is still so immune compromised she remains high risk but a win is a win…I’ll take it. They are still waiting on test results for multiple viral panels to figure out what is causing her tummy issues. Her t-cell function results did come back however they are not functioing yet…well…they are at 6% but the tone in the doctors voice was clear…that number is not anywhere near where it needs to be to introduce her to the outside. T-cell function simply takes time and there is nothing we can do to speed that process up. The fact that she has engrafted so well is great but those t-cells do us not a lick of good if they don’t work. She is still without immunity. But let me follow that with she is still amazing. Thank you all again for the constant support, kind words and generosity. We still have donations coming in and boxes showing up on our doorstep and every little bit helps to lighten our load. I never thought I get all giddy receiving things like hand sanitizer and laundry detergent in the mail but I do the happy dance every time Chris sends me a text showing more supplies arriving back at home. We will get out of here one of these days and our home is well on it’s way to being stocked for her because of you all. Thank you, thank you, thank you. 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

Amazon Wish List:

http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST

Target:

http://www.target.com/RegistryGiftGiverCmd?isPreview=false&status=completePageLink&listId=tpSUFAcTqQR_bAvBC_xDKQ&registryType=BB&cumulativeTime=-1&isAjax=false&noOfPings=

GoFund Me:

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

You can also follow Riley’s journey on Facebook:

https://www.facebook.com/rileyjanebrown?ref=hl

You know I am one of those people that has always had “my people”…just a couple of close friends most of which are family that I share my life with. I’m not anti-social by any stretch (pretty sure you can all tell I’m not exactly shy) I’ve just always had a quality over quantity thought process when it comes to friends. But this life changes everything. It changes the way that your current friends talk to you, everything they say is so thought out. They withhold bitching about their days because in comparison to mine it was peachy keen, when they ask “how are you?” it’s with true concern as opposed to just a carefree way to address someone. It’s not a bad thing…I get it…I appreciate it, I understand why…but it is different. A mother of a SCID baby who was treated here at UCSF this past year reached out to me and wanted to have lunch. I’m going to be honest here, I was excited and terrified at the same time. Her son was diagnosed with SCID through newborn screen in March and though he fought such a hard fight he passed in May. I all of a sudden felt a magnified glimpse of how my friends feel towards me, I had no idea how I would talk to her, what I would say…I felt so guilty that my baby was still here, that she is doing so well. My problems and what I am going through seems so miniscule, so trivial in comparison. But I wanted so bad to meet her and so we set a date.

Walking out the doors of the hospital yesterday  I was so nervous but there she was, the warmest smile and outstretched arms greated me with such genuine happiness. Ok. This is going to be good. Never would I have thought that I would develop such strong bonds with a stranger in a matter of minutes. She has said before in email that she feel like she knows me from following the blog and it really did feel that way, we instantly clicked. Sandwiches. Wine. Cupcakes. Common Ground. We talked about everything from fear, sadness, coping, therapy and the lingering desire to punch infants out in public in the face…ya know all kinds of healthy conversation 😉 We laughed…a lot. It felt so good to talk to someone, someone who REALLY gets it. Someone who went through the worst and is willing and able to listen. Her heart is huge…no joke…it gets any larger and it simply will not fit into her body. I feel so incredibly fortunate to have met her and have no doubts that yesterday was the first of many meals we will share. I’ve always needed an excuse to visit wine country more and seeing as she lives in Napa I just snatched up one big reason! Thank you Liz for following Riley’s journey, for reaching out, for coming down annnnnnd for drinking wine with me before noon. 😉 You’re the best.  xoxo

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Bye Bye Hair

I’ve had a fair share of hypothetical weight lifted off my shoulders in the past 10-12 days. Between Riley’s chemotherapy coming to a close and the transplant we have been waiting for since day 1 taking place the load seemed a little lighter. I actually felt as though I was shot to the surface of the reality I’ve been drowning in for months…I took the deepest breath imaginable and settled back in to holding it. My next breath will come with counts, her counts will go up as will I.

In keeping with the spirit of “lightening” I decided to lift some physical weight from my shoulders and voile…OFF with my hair. I am going to go ahead and assume that Riley will forgive me for not shaving my head bald in solidarity of her hair loss. However, if and when she’s able to argue that assumption and chooses to I am happy to hand her the clippers and off it all goes, that’s a promise baby girl.  My only request to my hairdresser (who happens to be my Mama) was this “put a rubber band at 8 inches and lop it off for donation” Every morning I wake up, pull my long locks into a messy bun and call it a day. Now that the majority of my days are spent here, here in this place where kiddos with hair are scarce I am sure you see letting go of it was not hard. It wasn’t really much of a question. That sorry excuse of an updo was doing no one any favors sitting on top of my head but the fact that there are organizations out there that can turn my mane into a wig for a child is remarkable.
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These kids are real…their loss is realer than anything you can imagine. Those commercials that you have a hard time watching because seeing the affects of chemo on children is too painful…those aren’t commercials for me and the others who happen to call a hospital “home”. That’s our lives, those are our children. Many babies are born bald but mine wasn’t, many babies lose their hair “just because” but mine didn’t. Her hair is gone because of chemotherapy. Every day a little more is on her blankets and it shows the true signs of what coursed through her tiny body. Seeing illness and treatment take those physical tolls on your child is excrutiating no matter the age. On a positive, I feel so fortunate that even though my little Riley is losing the hair she was born with she does not feel that loss the way an older child does. With that being said…for anyone out there who has ever donated…thank you, for anyone who has ever considered donating…please do it.

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P.S. Riley…your Daddy did buzz it all off for you and while that may not seem like a big deal seeing as he’s a guy and all…for those of you who know Chris…long hair is just kinda his thing. He’s now got a bit of an Adam Levine look going on which I might add- does not suck 😉

Here are a few links to organizations should anyone feel up to a “new-do” anytime soon ;)xoxo

http://www.childrenwithhairloss.us/

http://www.locksoflove.org/

http://www.pantene.com/en-US/PanteneBeautifulLengths

Thank you, Thank you, Thank you

Quick little blurb for everyone out there who reads the news on a regular basis because y’all have probably all lost faith in humanity. I know I had a bit before all this happened. But let me tell you, people are amazing. All three of these things happened to me today, not this week…today.

Numero uno…A girlfriend I have known since elementary school took time out of her morning to make a 3 hour round trip to visit us…yeah yeah she’s a friend, I’m delightful and Riley is adorable so that alone may not seem like a big deal to some but it is. It is a big deal. Seeing a familiar face that’s not dressed in scrubs (no offense to my lovely nurse pals) is amazing. On top of that she came bearing gifts…wine (which I plan to drink in my ante room tonight), face cream (she’s an esthetician and lord knows hospital air is doing my skin no favors) and some all natural baby wash/balm for Riley (her bottom appreciates you). Thank you, thank you, thank you Kelsey.

cuddlin' with kelso
Numero deux…A woman I have met only once but share HUGE common ground with in the form of SCID called up to my room today. She was downstairs with her son (who I believe is 9 or maybe 11,  I can’t remember now) for his monthly infusion and just wanted to know if I needed anything. Coffee, Jamba Juice, anything. I didn’t but I also didn’t realize that I needed her call. It was nice to small talk to someone who has been through it…especially someone who went through it long ago…it reminds me that there is light at the end of this tunnel. Sometimes I think I don’t need that reminder but I do and thank you Lynette for giving it to me. Thank you, Thank you, Thank you.

Coming in third which by the way does not mean last (simply just the order of events) is a big ol goody bag packed by a stranger but delivered by my dear friend and fellow SCID mom Kate. Her girlfriend put together matching giftbags for us both…makes sense to do for Kate but for me? She has never even met me. I didn’t know what to say. I then opened it and thought maybe this chick DOES know me?! It’s contents you ask? Two bottles of wine, a 12 pack of beer, frozen margarita mix, cheese and crackers. Girl knows there will be days when I need a drink and made it her mission to make sure I had poisons to pick from. Thank you Shannon, Thank you, Thank you, Thank you.

now that's one helluva goodie bag!
now that’s one helluva goodie bag!

People ask me all the time how I am getting through this and I just gave you 3 examples…and no it’s not the alcohol options I am now brimming with (though that helps). It’s the kindness, it’s the thoughtfulness and the it’s collective efforts of old friends, new friends and strangers.

Day +7

Today marks one week since Rileys transplant, day +7 as they say around here. I never really got a moment to sit down and write about how the actual transplant went and now it feels like so long ago. The event itself I can sum up with 2 words and a hyphen…anti-climatic. Many are under the impression that a “bone marrow or stem cell transplant” is a surgery or some sort of fancy pants procedure-I know  I was. It’s not and thank goodness for that. It was administered the same exact way she gets all the other IV meds, through the broviac line in her chest. Over a course of about 15 mintues the cells they had taken from my body made their way into hers. That was it. Chris and I just stood there watching, there was definetly a mix of nervous anxiety and excitement in the room. I half expected balloons, streamers and all sorts of other shit to fall from the ceiling like she was on a game show with a Bob Barker look-alike  shouting ”Come on dowwwnnn RILEY BROWN, here’s your CHANCE!” That didn’t happen…but really…that is what they gave her…a chance. Those cells are her chance at life. Her chance at re-buiding what she forgot to bring with her into this world, an immune system. I sure do wish it was instantaneous, you know like…here’s your cells and kick ya out the door kinda thing but no no that just isn’t how it works and thats okay. I just want it to work, I can’t tell you how many times I said that to Chris that day…”This HAS to work” and of course his response “It will, we’re one step closer to home.” He’s right, we are. We still don’t know how long we will be here and in all honesty timeframe is the last thing on my mind. I don’t care how long it takes just as long as it works. I don’t want her want her out of here a second too early and if that means 2,3,4,5 more months then bring it. We have the rest of our lives to be together as a family but we need her life to do that so wait we will.

Nurses monitoring vitals during transplant
Nurses monitoring vitals during transplant

The doctors and nurses have been preparing me all along for ups and downs, rough days, fevers, hives, pain, the works. So far it has not been nearly as bad as I had tucked away expectations in my mind. Has it been easy…no…will I look back and ask myself how the hell I was able to watch her go through this…yes. But right now, in the moment, day in and day out we’re getting through it. While she has definetly had her ups and downs the past 3 days she really is doing well considering. Her ANC counts hitting zero on Monday marked the end…the end of the faulty immune system she started with, it is gone and all we can do now is hope that her body can build itself a new one with the cells she got from me.

Here are the actual cells from me
Here are my cells…soon to be hers

So back to our current events…day +7 is definetly better than +5 & +6. She has been able to keep down food for the most part and the few times she has thrown up she has done it with a smile. Her pain level is higher today and so they are keeping that under control with small doses of morphine. I know, I know…I can just see everyones eyes bulging out of their heads as they just read the word MORPHINE…I’m right aren’t I? You got big ol’ bugged out eyes and you gasped a little, huh? Yeah, I did too when they first mentioned it. But after going through chemo where the nurses donned gowns, gloves, masks and safety goggles to inject something out of a double sealed bag that reads “CAUTION BIOHAZARD” into your infant you mellow out a tick. Hell at least morphine is something I’ve had in my body and it sure did make me feel better at the time. It’s nice to have something run through those tubes for once that doesn’t make her feel worse. Go morphine. Go Riley. She is sleeping now and again I’m sitting on my bum typing with crossed fingers (impressive right?) that she wakes up with a smile.

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As always thank you so much for the support. xoxo

To make a donation visit: http://www.gofundme.com/3x0iig

Any questions feel free to email me at rileyjanebrown@gmail.com

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Riley Update

I got back to UCSF today after a weekend at home with Presley and was looking forward to writing an update that went something like this…”Riley has done great since transplant…so far everything is going amazingly smooth…yada yada yada…” That entry was true up until about 11:30 this morning…then her heart rate went up and here came the fever. Nurses and doctors immediately began scrambling…tests, cultures, antibiotics, blood pressure, monitors…the works. Riley and I decided to take the stance of “cool and calm” she danced around in her crib as if she spiked that fever simply to see how quickly she could make the staff move and I stood by doing my best impersonation of “collected”.  Within minutes labs were drawn, within the hour she’d been loaded up with 3 different antibiotics and 2 hours later she was sound asleep. She crashed around 2:30 and when she woke up at 5:00 I just knew, something was off. Here’s the tricky thing about Riley…she doesn’t cry, she doesn’t fuss but the girl can give you a look…a look that just says “I’m miserable” and while I thought I’d seen that look before, todays was different. Eating has never been an issue for her but she begrudgingly drank a mere 2 ounces and then just molded to my chest, eyes glazed over and bottom lip pouted just enough to tip the scale from “cute” to “sad”. I called the nurse and told them that she was very uncomfortable and that I was concerned…I think they were a bit skeptical at my observation but I respectfully explained that she is not a crier and not to falsely assess her discomfort by the lack of tears. The initial response from a nurses assistant (whom I might add thinks her title of PCA holds a bit more clout than reality dictates) was “I’m thinking she’s just a bit spoiled from grandma holding her so much this weekend…” Ummm…no…sorry there sweet cheeks, she may be your “patient” but she is MY daughter and her discomfort isn’t due to an overload of what I refer to as LOVE. Riley has been left with her grandmas (yeah she’s got several) almost every weekend for the past 2 months and yes I guarantee they hold her more often than not but guess what…they’re grandmas, that’s what they do and it’s not hurting a damn thing. Being pressed up against positive energy is not the cause of her pout. I damn near bit my tounge clear off and just casually said “Ya, I wish being spoiled was the problem but I’m gunna go with it’s more likely the SCID, chemo, bone marrow transplant or fever that’s the issue.” My sweet sarcasm shockingly was not lost on her and she scampered out the the room feeling maybe a tad silly. Five minutes later when Riley explosively puked ALL over herself, myself and the surrounding areas I must say it did my little black heart good to hear the nurse page that same PCA…”I need you in 735, we have a major vomit situation for you.” Whoops. I’ll raise your medically irrelevant opinion of “over-cuddling” with a “clean up on aisle 5”. Annnnd…that round went to Riley. Ok, ok enough of me being snotty. Really we have been fortunate with the care we receive here, today I believe we were just meant to teach someone a lesson…one of my favorite lessons…the classic “probably shoulda kept that thought to yourself,huh?”

After a quick bath Riley decided she’d seen enough excitement (as well as felt quite a bit better after unloading her last feeding) and went right back off to sleep. She took about an hour nap but definitely did not wake up with her usual spunk. I think the dreaded mouth sores that Chemotherapy often brings is hitting our little girl and toning down her enthusiasm. She managed to quickly drink 3 ounces (a less than normal amount for her) before what seemed like forcing herself to go back to sleep and avoid the discomfort. Poor. Thing. I’m hoping that she can manage to just stay asleep and miss out on as much of the pain as possible.

All along even though she has been seemingly unphased by everything thrown her way I have been preparing myself for days like this, days when it becomes all too obvious that my baby is sick. Her ANC (absolute neutrophil count) bottomed out at 0 today meaning the chemotherapy has done it’s job, any and all immunity she had is gone. Her feeling so crummy is right on time. Now we just need to focus on keeping her comfortable and cross our fingers, toes and all other appropriate appendages in hopes that those counts begin to rise and rise quick.

Loads, loads, loads of positive thoughts and all other means of happy juju are needed and appreciated. Thank you all. xoxo

 

To make a donation visit: http://www.gofundme.com/3x0iig

Any questions feel free to email me at rileyjanebrown@gmail.com

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