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.

photo-62

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.

photo-55

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.

photo-56

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

photo-54

Riley Update

Time moves so strangely here…half the time I have no clue what day it is and don’t even get me started on what the bloody time change has done to my brain. As if I wasn’t confused enough…sheesh. For the first time I had to go back and re-read my last update because I couldn’t for the life of me remember the last thing I wrote about…whoops. So…after that little refresher here is the lastest on Riley. The results for her respiratory panel came back on Saturday and she tested positive for the rhinovirus…sounds like a big bad beast because well the word “rhino” preceeds virus but it really is just the fancy term for the common cold. Granted the “common cold” for an immune compromised baby is a bit more nerve wrecking but there really isn’t any treatment…it’s just kind of a wait it out kinda thing. When Presley has a runny nose my biggest worry is her using her hand to wipe the snot straight up her forehead and into her hair making her curls stand at attention…with Riley it’s a little more involved. They are keeping a close eye just to make sure that they catch anything else going on and that this virus passes through her quickly. Saturday they also sent out an additional stool sample to get a broader virus panel in hopes that they can figure out the cause of her diarea, results on that shouldn’t be back until later in the week. Yesterday I was thinking we were at the end of our road with runny diapers but this morning she had quite the explosion that let me know right away we were NOT done. Shit. Literally. So that is where we are in terms of virus/infection/reasons for feeling crummy. As far as counts. Still no results back on the function test though from what I’ve gathered they don’t expect to see function for a couple of weeks, it’s one of those things that just takes time. Labs were drawn yesterday morning and the biggest change was her ANC counts dropped pretty drastically this week…they went from 2300 down to 890. They decided to give her a dose of the GCSF (the same med I got to boost cell production pre-harvest) in hopes that it will help bounce those counts back up. As you remember from my whining that medication causes some pretty serious discomfort so yesterday evening she took a break from her usually smiley demeanor and wore a frown from about 5 o’clock on. She decided she was going to just sleep through it…good plan. She’d open her eyes every 4 hours or so and give me a “put a bottle in my mouth and don’t you dare touch that light switch look” guzzle it down and be right back out. They drew labs again about 4 a.m. but I was so out of it I didn’t even inquire as to why but I assume that it was to check her ANC, docs should be by for rounds by 1ish and I will know more then. She woke up happy this morning, sounds like a little pig from the congestion and quite frankly smells like one too thanks to her bowel issues but hopefully all farm animal similarities will be resolving themselves soon.

photo-53

Hoping that she has a happy “feel-good” day and that her counts get back to an uphill trend. Prayers, positive thoughts, appendage crossing…whatever it is you do to send good vibes please do. 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

Riley Update

Well we are settled in now to our new room…it’s weird not being so secluded way in the back, weird but kind of nice. It’s a nice reminder that Riley’s is that much closer to the door…32 steps closer to be exact. Yesterday while carrying some bags out to the car I think it hit Kate and I both…whoa…one day we’ll actually move out of this place…gahhh!!!!  🙂 I can’t wait but, well…yes I can…I can wait, I want to wait, I don’t want to rush her recovery, her chance, her life…however long it takes I’m up for it.

see ya later 735...rockers waiting for you Kate! :)
see ya later 735…rockers waiting for you Kate! 🙂

 

Hello 722
Hello 722

The past few days Riley has not been feeling all that great…I know I know it’s hard to tell that through the intoxicating giggly videos on Facebook but she has the ability to insert happiness into any situation as we all know. She hasn’t been eating much during the day and has had a bad case of the runs which always leads to a stool study being ordered (yup they study my kids crap). They basically run a panel of tests for different infections and place our room on additional precautions meaning gowns, gloves and face masks for all who enter. Luckiliy the fact that my role in this play is “Mom” I get to skip the over the top attire, phew. The results for those studies came back yesterday and she was clear of any of the infections they run for so that is a good sign. We are still waiting on respiratory panel results that they ordered courtesy of a big ol snotty sneeze she sprayed out yesterday (you’re welcome for the visual). Fingers crossed that she is infection free there as well. Alllllso…she developed a rash on Tuesday a couple of hours post blood transfusion. Man you mix rash, vomiting, diarea, lack of appetite and weight loss and they get movin’ around here. I think Riley heard the word discharge and was like “no, no folks…I’m going to throw you for a loop and make things interesting.” Her rash pretty quickly cleared up leading them to believe that it was a mild reaction to the blood products she was given which is very common. She’s had more transfusions than I can count since we’ve been here through in the past since she was so rashy all the time we probably never noticed any side affects. Solution for that will just be to pre-med her with Benadryl should she require an additional transfusion. Easy fix.

The things that we are most concerned about now post transplant are infection and graft vs. host disease. We REALLY want to avoid both of those little buggers. The symptoms that she has been having could just be nothing or could be warning signs of infection or GVHD so they are keeping an extra close eye on her. She only held down about 3 ounces of formula yesterday between 5 a.m. and 4 p.m., she either wasn’t interested in eating or decided it looked better on our clothes than in her belly all day long. Around 4:30 they decided to start her on  IV fluids to ward off dehydration so she’s back to being plugged in but that’s ok, she’s just as cute with cords…just a little harder to hold 🙂 I had a long talk with Dr. Shimano yesterday (the attending BMT doc this week) and even with all of the curveballs she’s throwing our way she they are still happy with the progress in her counts. She has a whopping 114 T-Cells, normal is in the high hundreds so she still has a ways to go but it’s a damn fine start. Still waiting for the function test results, those 114 cells don’t do us any good if they aren’t working so again…fingers crossed. Dr. Shimano (and the others) want to see increased numbers, function in the cells, CMV levels to be at zero and for all of these pesky symptoms she’s been showing to stop. We are probably looking at a minimum of 2-3 more weeks here before inching our way any closer to the door.

I’m heading home today to spend a couple of days with Presley…my Mom is here now so she’ll probably snuggle all the icky feelings right out of little Riley. Send lots of positive vibes our way and hope that our tiny trooper gets to feeling better soon. xoxo

photo-52

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

 

Goodbye Room 735!!!

We’re moving rooms!!! Those exclamation points are for excitement not frustration by the way 😉 Excited about moving rooms?…what’s exciting you ask?…well let me tell you. Riley has counts therefore no longer requires the severe isolation back here in the pediatric BMT unit…we will still be isolated to a room but it will be in the hallway of 7 Long…we are only moving about 6 rooms down, nothing too extreme buuuuuut the room we are currently in will be welcoming little Elise as she starts on the next phase of her SCID journey. Kate (Elsie’s mom) whom I have talked about several times but here’s a quick refresher…she got the same damn phone call that landed us in this joint just 3 weeks after us, her and her husband have a 3 year old daughter as well and she has been my faithful friend, drinking buddy, shoulder to curse on (because I’m not much of a crier) from the moment we met.I remember promising her months ago during her first days in the PCRC that it would get easier, that it would get better and that I’d be here for her every step of the way. She didn’t believe me then but chose to trust me anyway and within a few weeks she was settled in to hospital life, gettin her yoga on at gym across the street as I suggested and being an absolute rockstar Mom to both girls despite the distance in between. The bond we have developed is something that no two other individuals will ever understand…we are living such similar journeys, sharing in this nightmare together but taking great measures to turn so many of the moments spent here into happy ones. We have laughed, cried, drank, gossiped and held each other up when the other knew we wanted to fall apart. I’ve said it a million times and I will forever feel this way…in no way would I have wished this on either of us but I am so thankful that we are at least going through it together. Even her family and friends have been amazingly supportive of us…you’ll remember her friend Shannon who gave me the huge gift bag of booze and carbs (yeah buddy) and other friends and family members of hers have reached out with kind words and donations including her parents. Seriously…Kate has got some good people surrounding her and I’m lucky to be in that mix.

Elsie will be starting her chemotherapy on Saturday with bone marrow transplant to follow I believe on the 14th (sorry if I’m off Kate). The fact that she will be going through all of this in the same room Riley did just feels like good juju (or something like that) to me. Riley has done so well tolerating all of the ups and downs of this process and I hope only the same for Elsie. It’s a really surreal place to be in with Kate…looking at her is like looking into a mirror image of my past self…everything that she is going through I literally JUST went through (there are a few small differences in treatment but generally speaking) and for her looking at me is a glimpse of what’s to come. The other day when Elsie got her broviac line placed seeing the look on Kate’s face right before they came to pick them up for the surgery almost brought me to my knees, the fear in her eyes was the same exact fear I had felt. It is so surreal to witness someone experiencing the emotions that you yourself just felt weeks earlier. I think thats when it hits me how hard this all really has been on me. Elsie is an amazing little girl and Kate is one helluva woman and they will get through everything that will be thrown at them in the next two weeks just as we did.

little Elise Ann
little Elise Ann

So to you Kate…Riley and I are filling this room up with all the good vibes we can squeeze in before our asses get kicked to the hall. I will be here for you every step of the way. The offer of “lets switch kids for a day” that I extended to you the other day when Elsie was NPO and unhappy about it extends throughout her chemo and transplant, day or night you need a break come find me in room 722 lady and we’ll confuse the shit out of the nurses by switchin’ beds 😉 You will be on the other side of this before you know it and let me tell you the view from over here is way better. I love you girl. xoxo

When you think of Riley, think of Elsie…especially over the next 2 weeks as she goes through her conditioning and transplant. To follow her story you can read updates on her Caring Bridge here: http://www.caringbridge.org/visit/elsiebrooks.

Each day the doctors are coming in throwing that “discharge” word around with Texas sized smiles plastered on their faces…their mannerisms, tones and  expressions are all so different then they were just a few short weeks ago. It’s like they can relax around me more…its no longer a “we’ll do everything we can to save her” vibe but an “oh my gosh we SAVED her.” It really is a fascinating process to be a part of. I have been playing the role of supporting Mom day in and day out, just hanging here in the balance making sure that every moment I spend is supporting the hell out of this little baby and now that we’re so close to the end of this phase of our SCID journey I feel even my shoulders let down a little. We came into this hospital on the wrong side of the odds…1 in over 100,000 and we were the “one”. Statistics like that sure have a lot more meaning when you are the “one.” I will never look at any sort of numbers like that the same again…I have more in common now with the 1 than the humongous number that generally follows. I can relate. I can identify. I can feel that terror. But here’s the thing…we are going to walk out of here on the right side of the odds. Because of the newborn screen Riley was given hope, because of the advancements in medicine she was given comfort and because of the support of her doctors, nurses, parents, friends, family and strangers she has been given a chance at life. A real chance, at chance at normal, at chance to one day be able to roll around in the dirt. Damn, thats amazing.

photo-49

I cannot believe we are so close. Here comes the “oh shit, oh shit” mantra ringing in my ears once again. I am so excited to go home, to take her home, to watch her and Presley get to know each other all over again and to feel what its like to be a family for real this time. But I am so nervous. Just like I was nervous before I had her about how life would be with 2 kids, about how things would change, how we would adapt. We are right back there…for me this is what having two children has been like…this life…this crazy back and forth, 4 days here 3 days there, hospital/home life is normal. Our “new normal” that I have always spoken of has become our normal, now we are going to have a “new new normal” to figure out. It is scary heading in that direction, the direction of the door…I feel safe here. Even when I have been delivered bad news, she’s been in pain or she’s spiked a fever we’ve had that comfort of being IN the hospital surrounded by trained professionals who know what they are doing and that sure does take the pressure off me a bit. When we take her home it’s all on us and that comfort zone that is the hospital will be an hour and a half away. Hmm. Ughh. Scary. Ok ok…pull it in, deep breath. Just as I have here I have to remind myself to take the fear out of this, being “scared” is helping no one…it’s sure as hell not making me feel any better (screams the accrobats doing flips in my stomach). This journey, her life is what it is. On good days, bad days, days where it’s obvious she’s sick and days when it’s clear that she is a pure miracle…it all is what it is. Home will be amazing, I will do my best to check my fear at the front door as I step in and carry only the best thoughts and intentions inside. Whether she is happy, sad, showering me with vomit or giggles she is amazing.

Last week my “so much to do” epiphany which struck me in the middle of a post led to me compiling a series of lists…to-do, to-get, to-buy to-schedule, to-clean, to-throw away….insert large explosion sound affect here…yup, that would be my brain combusting. Needing this much stuff is so foreign to me. None of this comes natural. For a few reasons…a.) I am NOT a stuff person…anyone that knows me knows that, I don’t like stuff…ask Chris-he always complains I’m impossible, every Christmas and birthday he hounds me to tell him what I want and my response is always “I don’t need anything.” b.) I’ve never been a germaphobe…Presley can make a nasty mud pie in the backyard, she generally has a bit of snot somewhere on her face (she is 3 and all) and runs wildly barefoot all over the compound…my motto has always been…hey whatever, wash your hands before you eat and get hosed down something fierce in the shower at the end of each day and call it good. That little diddy just isn’t going to work for Riley Jane. Shit.

Eveyone has been so wonderful offering help and support in so many different ways, I couldn’t be more grateful. After so many suggesting that I register for things that we needed I gave in…I created an Amazon Wish List which really helped me to consolidate my many many lists. Someone who follows the blog emailed me recommending it because you can add things from any website, that totally helped as some of the things we need are baby items while other are cleaning or medical supplies. So be prepared…many of the items aren’t the standard “baby registry” finds…it’s a lot of household, cleaning, storage and other boring stuff but hey at least now I have everything in one place so I’m not so scattered. Maybe Oprah will stumble across it and do a “Riley’s favorite things” episode haha…I can picture her now shouting  and pointing away…”YOU GET BLEACH WIPES, YOU GET A VACCUM, EVERYBODY GETS HAAAAAND SANNNITIIIIZER!!!” Ok ok, back from that day dream….I told you my brain is fried 😉  I wish everything Riley needed could come from some big box baby superstore but turns out they don’t carry the antimicrobial bacti-stat soap that we use here in the hospital…shucks. I did also register at Target because I know that may just be easier for some people…if you’re anything like me Target is a destination frequented weekly. I am feeling a bit less overwhelmed now that I at least have a visual of what we need and an easy place to add things as the doctors drop more “oh and you have to do this too…” type things on me. Everything is adding up so quickly and every bit that anyone has offered to help or take care of for us is appreciated more than you will ever know.

Thank you all again, really truly for everything. For following, for sending such supportive words our way, for donating, for being the biggest cheerleaders Riley could have ever hoped for. We are so close. Go Riley Go! 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

WooooooHooooooo

Screw the candy I got the BEST Halloween treat EVER!!!! Dr. Dvorak (one of Rileys MANY doctors) called yesterday and engraftment results are in. Her stem cell count is at 98% and they are MINE!!!! Woohoo!!!! This is great news…much higher than the expected. SCID immunity post transplant can be considered on their way to “functioning” with engraftment levels as low as 20% so the fact that her numbers are so high is fantastic. They may fluctuate a bit but she would have a long ways to fall before it became a major cause for concern. She has given herself quite the cushion. Her T-cell count is still relatively low at 35% and she has no B cells but that is to be expected at this stage. Our next milestone is seeing some function in those T-cells which is hopefully the results we will get from pending tests expected to be in late next week. If everything keeps trending up, the function comes through AND Riley stays infection free we will be starting to talk discharge dates!!!! GAAHHHHHHH!!!!

Just keeps going and going!
Just keeps going and going!

As we approach even just the thought of bringing Riley home we are beginning to tackle the HUGE booklet that is “discharge requirements” and get our house ready for isolation precautions. Not only will we be pulling Presley out of preschool but she will be on respitoray isolation as well meaning no contact with other children, no playgrounds, no grocery stores…nothing, home all the time. All you parents of toddlers just cringed a little, huh? Yeah, I know…isolating a 3 year old?…chew on that. Grrrr…No joke…we will be the bubble family. We have so much that needs to be cleaned, prepared, purchased, thrown away, stocked, thought through…my head is just in a constant state of “spin”. Since ending my post the other day with that epiphany of “ruh-roh I need to make a list” I have had so many emails and offers of “what do you need”, “I’ll go shopping”, “send me the list”, “register”, “don’t worry about a thing”, “let me get the house stocked for you” I am still so floored at how willing so many are to help and honestly I couldn’t be more thankful. Lets be honest the absolute LAST place I want to be right now is in a Babies R Us…don’t get me wrong I’m thrilled for all those pregnant Mamas and those healthy lil babes but does it bring up a lil hormone craziness that I don’t particularly have the energy to suppress?…uh-huh. 😉

With Riley being our second child and our second girl for that matter we literally bought nothing…we had everything from Presley plus I was breastfeeding and cloth diapering…girl didn’t need a thing. This whole no immune system, chemo, transplant, isolotion bit changes things just a smidge. Not only does she require a fancy schmancy formula and disposable diapers but all those “hand-me-down” goods we had (carseat, stroller, playpen, etc…) can no longer be passed on to our lil Miss high maintenance 😉 And then there are the cleaning supplies and equiptment…the endless amounts of products that it is going to take to keep our home sterile on a day to day basis is outrageous. Needless to say we need a lot of stuff and have to be as stocked and prepared as possible before she comes home. Truly my list of lists is getting out of control. A huge thank you to all that have offered to help and buckle up because I just may take you up on it 😉

photo(18)

Please keep the positive thoughts coming…this is all such wonderful news but we still have a very very long road ahead of us.

 

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

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

You can also follow Life of Riley on facebook https://www.facebook.com/rileyjanebrown

 

 

Getting closer…

I have been so consumed with taking care of Riley while here at the hospital and then soaking up every second with Presley while I am home that I have hardly had a chance to check email these past weeks. Many of you I’m sure can attest to that as your messages have gone unanswered. Please do not think that I don’t appreciate everything that comes my way and know that when I do get a moment to read it’s usually when I need those reassuring words the most. Problem is I usually have just enough time to read it, compose my emotions and then poof…Rileys up and email time is over. It’s a miracle I’ve been able to update the blog even as seldom as I have lately. I also hadn’t checked the donations page in…well…quite honestly I don’t remember the last time and holy moly do I feel like an ass. Really…I’m an ass. We are over the original goal that I had set and I don’t even know when that happened! And to say I am behind on sending out my “thank yous” is an understatement, but you better bet I WILL get to it…one of these days. 😉  It knocked the wind out of me a bit to see that through the donations of individuals ranging from 5 to 500 dollars we were able to rally together what I had thought in the beginning was about what we’d need to  help us through this. Looking back now almost 3 months later the fact that I thought $5,000 was all we would need is kind of adorable…comical even. I remember sitting down and setting up that page and am seriously giggling to myself now at how I really hadn’t realized what we were in for. At the time I thought that I would be able to “work from hospital” you know because I’ve always worked from home. What a moron I was. Work from hospital? Seriously? Like it’s even remotely possible to concentrate with your newborn babys monitors sounding off every 15 minutes not to mention the constant cries of the other children whom I share walls with ringing in my ears; but yeah designing a fresh marketing campaign for our new plumbing showroom from scratch is totally doable. Stupid girl. I think in the beginning it was probably a defense mechanism…like I wasn’t allowing myself to really realize how sick my baby was…I just thought I’d carry on normally with my day to day just in a different setting. It is so surreal to look back on those days now, days that seem so long ago and see just how wrong I was about thinking I could continue to “do it all.” These days my  “do it all” is different. It has to be. We have no other choice. My days are 200% focused on Riley and Presley…at the hospital taking care of Riley is constant, there is no room for my focus to be anywhere but on her and when I go home it is the same story with Presley…I have 2 days to fill her up with a whole weeks worth of Mama love and so “not now Presley, Mommys busy” is just not something she will hear. The bills, the debt, the financial “ruh-roh” will be waiting for me when I get home, right now the focus is solely on getting us home.
photo(17)
Now that we are on the right track of cell counts going up and Riley trotting along down the path they’ve paved the word “discharge” is starting to get thrown around. Yeah thats right…turns out this little possum may be busting out of these walls soon. Now “soon” is a loose term in a hospital and its true definition as it pertains to us walking out the door is still out for discussion. But the word “weeks” has also been used…now while most of you probably just got really over the moon excited and are like “OH EM GEE….yay they could be home in a matter of weeks?!?!?!!” my reaction is a little more reserved and by reserved I mean scared and by scared I mean well…I’m literally feeling a bit sick to my stomach and chanting “oh shit oh shit oh shit oh shit” in my head. Seriously…the inner workings of my mind right now are a gnarly mess…be glad y’all aren’t all up in there. Do I want to get out of here?…hell yes. But is it absolutley terrifying?…YES. So much more than I thought it would be. I didn’t feel excited when they told me, I immediately morphed into “nerve-woman” a rare breed of freak reserved I believe for Moms who have been holding it together for a little longer than is probably healthy. Obviously I cannot wait to have my family back in one place but understand that the last time this little girl was in my house we walked out that door unsure if we’d ever bring her back. That’s just a lot to handle and I think I’ve always known my melt down would come when this is all over. I am so happy that there is an end in sight especially because it is looking like a happy ending but with that is coming the calm…the exhale, the OMG that happened to us. Phew…heavy.

Yesterday the doctors informed me that now looking back and reviewing her symptoms and how quickly she has bounced back post transplant they strongly believe that her SCID was or was becoming Ommens Syndrome. Ommens is a particularly nasty form of SCID…discovered in 1965 only about 68 cases have even been recorded and not many have ended well. Babies with this syndrome do not make it past 2-4 months if untreated. Having a team of doctors tell you how well your baby is doing and that she is going to be okay then following that up with…”it really is amazing, this is why we are so excited about newborn screen because we have never seen an Ommens case before fully developed and by that time it is always too late” is well…the hardest most wonderful words to hear. It seriously sent chills radiating through my bones…I always knew that Riley’s condition was one that was life-threatening but to know that she fell into that category, into a category of certain mortality is very…I don’t know…really, I don’t know what word I’m looking for but I’m sure you guys don’t either. Looking down at her as they were telling me this knowing that if it wasn’t for a simple test she wouldn’t be here, that not only would she not be here but her life would have been so uncomfortable so miserable so sad…I’m just amazed. Riley is a gift.  Almost all of her days have been spent confined within hospital walls yet her life and the light it has created remains uncontained.

The next few weeks will be spent shrouding her with positive energy, eagerly waiting each day for test results. Counts, T Cells, B Cells, NK Cells, function, function, function. Along with that we will be hurriedly preparing the house for the arrival of Miss Riley and all the complications she brings through the door. Presley will have to be removed from pre-school and completly isolated for at least 1 week prior to bringing Riley home and then from there we become bubble family. It is a damn good thing Presley loves Riley so much because she is all she is going to get to play with for months. 😉 We have so much to do to prepare, so much to clean, so much to get…oh yeah…oh gosh…I have to get stuff? Whoops…omg I need diapers, bottles, formula…oh man I need to make a list…shit it’s like having a baby ALL OVER AGAIN!!!!! Last time I took her home she was a breastfed baby in cloth diapers…this whole no immune system thing tosses boobs and cotton right our the window…oh how things have changed. Well…I’m going to leave you now that I’ve had that epiphany and start making myself a list. Keep on keepin’ on with the positivity for Riley…she is amazing, her support system is amazing. Thank you all…and to those who I owe thank you notes, they’re coming I promise…I’m not short on gratitude just on time 😉 xoxo