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.

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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:

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GoFund Me:

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

You can also follow Riley’s journey on Facebook:

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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

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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.

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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 😉

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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.
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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

Apologies for being a bit M.I.A. when it has come to updating this past week but in all honesty I needed a bit of a break. I didn’t realize that until my best friend Deena got here last week to spend a couple of days with Riley and I at the hospital. Having someone here in the room with us for an extended period of time I think let in sink in a little for me just how “not-normal” the way I spend my days here truly is. Not in a bad way, it just put me in a place of reflection I think. I’m by myself up here ALL week, all the time in a constant state of navigating my emotions and keeping positivity on the forefront. Being able to just sit and have conversation be it deep or mindless with someone who wasn’t leaving within the hour really put into perspective for me how much I’ve changed. Being this parent (as in “Mom of sick baby”) changes you. It has to, it changes everything. It changes the way you think, react and feel. It changes the way people look at you, talk to you, think about you. I’m now “perspective” for people when they are having a shitty day. I can’t tell you how many times I’ve heard different variations of this “you know I was stressing about _______ and then I thought of you and…well…what I was stressed about was stupid.” That’s an odd position to be in. I by no means want the journey that I’m on to belittle the day to day crap that others are going through but in reality I am happy to hear that people are letting go of the little things a bit each day and if I have something to do with that then SWEET. It is weird though. Whoever I was before…whatever people thought of when they heard my name is gone, and that is okay. I don’t think I knew who I was before anyway…I sure as hell didn’t understand my emotions or how my mind really worked but going through this has really taught me to focus, to pay attention and more than anything to be present in the moment. My life will no longer be made up of days but of moments and moments are all good, even the rough ones because they are mine and my attitude shapes them. I’ve learned to leave myself open to receive even the “bad” with the intention of good, keeping that mindset really has enabled me to maintain not just my sanity but to find happiness. It’s good stuff, I’m telling you…give it a whirl. 😉

As for little Riley she continues to be the trooper of all troopers. Her ANC started climbing last week as they introduced her to GCSF (the same medication I received to boost cell production for harvest) We started at 0 and then 50, the next day 100 and then 500…1400, 2600, 3100, 4000…go Riley GO! I refrained from posting these numbers daily or from running around outdoors shouting them at the top of my lungs because they can and will fluctuate. I myself am 150% aware of and prepped for that but I don’t want people to feel “WOO-HOO” one day and then “OH NO” the next if they go down. They will go down but then they’ll go back up…that’s simply just how this works. They stopped the GCSF 3 days ago and so her counts have been going down…again that is OK. I remember what it felt like to have my cell production ramped up and honestly I’m happy to see her counts down a little lower because it’s not a comfortable feeling to be running out of space in your marrow. Her ANC levels are within normal range for a healthy child…does that mean Riley is now a healthy child? Umm..no…not even a little. It was a nice thought there for a second though, huh? 😉 The ANC is simply the Absolute Neutrophil Count, neutrophils are a type of white blood cell that help to fight infection so yeah buddy we want lots of those but that is not all they are looking for but it is indeed the first “milestone” per say. The ANC is what they wiped out with the chemo, the fact that she does have counts back has lowered her risk for infections a bit and so they were able to take her off the pile of preventive antibiotics she was on. Next thing they are looking for is signs of engraftment; signs that her body is accepting the cells from my body and multiplying them on her own. Then they want to see T-cells, then see if the T cells are mine or hers (yeah, they can tell…so freakin weird) and then it’s all about function. Those T cells won’t do her a lick of good if they don’t work. They better work…I sent those little bastards in there with all the good intention I’ve got so fingers crossed they got the message. This journey is going to be all about baby-steps, small wins and lately we have gotten several  and every one feels SO good. Here’s a lil list of some of the wins from the past week…ANC climbing, no signs of rejection, no one got barfed on, medication tappered off, one lumen hep-locked, no one got barfed on, we can now eat and drink in the room (HUGE win), her skin is still rash free and did I mention no one got barfed on? Lots of wins.

I am waiting on the doctors to come in for their rounds and fully update me on any new details for today. I did hear from my nurse that they are going to take her off the round the clock Zofran (anti-nausea med) and administer it only as needed. While I know that everything they’ve pumped into her little body is to help her it really is nice to see things slowly drop off and become “as needed” as opposed to “in order to function”. She continues to feel pretty good…still has her moments where she gives me the “I feel like shit” face but man it is the cutest little face and she has pretty much learned to just close those big blue eyes when that feeling creeps up and sleep it off. Please keep sending loads and loads of love our way. xoxo

Another day in the life…

So here was Fridays scene, I’ll paint you a REAL pretty picture, trust. I’m headed home mid-morning after a week of comforting my 3 month old whos been barfing on me non stop courtesy of chemo/transplant fun and what do I find myself in you ask? TRAFFIC…a big rig accident blocking all 5 lanes of the 101, why wouldn’t my hour and fifteen minute drive home take 3 hours? I mean really. About 45 minutes into not moving I get a call from my Mom informing me that Presley got sick on the way home and Chris (who had an impacted wisdom tooth surgically removed Wednesday) was now elbows deep in Presley puke. Now don’t get me wrong, my man can handle our sicks kid but when his face is swollen to softball sized proportions I wouldn’t have exactly planned to put it on his “to-do” list. I had planned on picking Presley up from my Moms but Mr. Big Rigs hurry brought my commute to a screeching halt hence the drop off. My positive spin on the delay…I got to talk (hands free of course) to my best friend, a real luxury since I find time for phonecalls next to never these days. But yes…Riley=fighting for life, Chris=impacted wisdom tooth, Presley=stomach flu and Me=somewhere between SF & SJ in the  limbo of this back and forth life I call mine…no breaks to be had for the Browns this weekend it seems. Shit.

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Lucky for me Presley is disgustingly sweet when she is sick. No joke there have been times in the past where I have actually been a little sad (insert terrible mom judgement here) when she gets better because she really is THAT sweet when she feels crummy. Chris felt so bad, he kept saying “I am so sorry you came home to this.” My feeling…listen here puffy…this is EASY. I’m stoked to spend all weekend smashing your food and cuddling with a tude’ free toddler. It was refreshing taking care of Presley, knowing that she was fine, knowing that her sickness was simple, I could fix her. It felt amazing to have to convince my child to take Tylenol because for her taking meds is not a part of day to day norm, silly right? It was still no fun seeing Presley sick but man when it’s the “healthy” kid that’s sick, the one who’s body can fight the bug, the one who’s equipped…it’s just not that bad. Let me reassure…I didn’t just give her the ol’ “listen here lady you are FINE”. I took care of her just as I would have before, maybe even loved on her a little more because I had never before experienced being so grateful for what I thought to be a simple given…immunity.  Presley unloading her jamba juice all over us was almost welcomed. We both got to shower immediately in an actual bathroom and let me be the first to say I’ll take dripping in “orange dream machine” over baby formula ANYDAY. But really, that would have been a stressful situation 6 months ago…not now. Now it’s adorable. Presley bounced back to her bossy self in less than 24 hours and we managed to have a really fun weekend even if the universe originally tried to screw with those plans.

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Very proud of the sign she made at school for Riley
It'll be waiting above Rileys crib for when she comes home!
It’ll be waiting above Rileys crib for when she comes home!

Riley had a good weekend as well, Chris’ Mom and my Mom took turns at the hospital and as always loved their Riley time. She felt pretty good the majority of the time, did well overnight all three evenings but would hit the occasional wall during the day and the discomfort would seemingly overwhelm her a bit. Enter nausea and pain meds. Chris and I are so fortunate to have rockstar Moms who are both able and willing to take care of Riley so we can play “normal family” on the weekends. I can’t tell you how much time I spend being grateful for the family unit we have, it is unbelievable how lucky we are. I got back to the hospital yesterday afternoon and all continues to be uneventful which is good. The docs came in for a quick chat and are happy with how things are progressing. Riley is getting less and less meds almost daily it seems which is great, it’s a wonderful thing to start seeing some of these cords and pumps go away. She did great last night…fell asleep at 7, woke up every 3.5 hours to eat, filled her diaper and then let her heavy eyes fall shut in minutes. She is the picture of a perfect 3 month old…you just gotta squint a little to block out the hospital background. 😉

She just woke up and is now in VERY deep conversation with a blue elephant…I should see what those two are scheming about. Keep the positive vibes coming our way! xoxo

September 26, 2013

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I’m going to go ahead and preface this with…IT’S LONG…didn’t realize how much had happened and how much I had to update so brace yourselves and get your reading glasses on 🙂

While it has only been a week since I last updated so much has happened that I am not even sure where to start. Wait. Hold that thought. More doctors just walked in. Ok…I’m back…story of my life 🙂  Last week the development of CMV was a total game changer. We had gotten into a pretty nice routine down in the PCRC, I knew most of the nurses, had developed a great friendship with the new SCID Mama next door (Kate) and in general was comfortable in our “new normal” of hanging in room 604. Those first weeks we had a healthy SCID baby which is much different than a SCID baby with an infection. Now that we are in the latter category things have gone from a test of patience to full speed ahead in a matter of minutes.

Last week it was pretty clear that little Riley wasn’t feeling good, she developed a few rashes and in general was more restless, pale and “weak” seeming than ever. More blood was having to be drawn to monitor the CMV and she started the IV antibiotic gansiclovear twice daily to combat it. It was now noticeable that she was sick as opposed to the usual “she looks and seems so perfect how is it possible that anything is wrong”. That was a hard thing to swallow…reality slowly began to creep up and I did my best to let it set in.

Thursday of last week my stepmom Donna came up to spend the night with Riley so I could go home and spend time with Presley. Leaving her when she was clearly not feeling well was so hard…the knots in my stomach became more complicated and a wave of guilt/worry/terror/sadness rushed over me. Luckily Deena (my best friend) had flown in, having her made it easier to suppress all of that and walk out of the hospital acting as if I was okay. About 30 minutes later one of the immunology doctors called to tell me that they would like to give Riley a blood transfusion. WHAT?! They explained that all of the necessary blood draws were most likely a big cause of her weakness and lack of color and that the transfusion would help with her energy levels and appetite…ok sold….whatever needs to be done to make her feel better and plump up for transplant. Deena asked if I wanted to go back and I said no…if you would have told me 4 months ago that I would get a phonecall telling me my newborn needed a blood transfusion and my response would be “okay, no I don’t need to be there, keep driving” I would have said you had lost your damn mind. It is amazing how much has changed. Terms, procedures and heavy medical jargon that would have terrified me months ago are now a part of daily life. Riley would soon feel better, be snuggled by Donna and my role as Mom was now to go and scoop up my precious little Presley who hadn’t seen me all week.

The transfusion went great…sounds scary but it really is just another syringe that gets hooked up to her IV pole and in goes the goods. The “goods” in this case being blood. Her color came back and she almost immediately started seeming more like herself. Riley remained in the PCRC throughout the weekend where they continued to monitor her rashes, weight and CMV levels. Grandma Carol (Chris’ grandma) was there with her Friday-Monday and made sure Riley was spoiled with snuggles while I did the same with Presley down in San Jose. That was the longest stretch I had been away from Riley, it was hard but being away from Presley is just as much of a strain and since I don’t know what the next few weeks hold I wanted to soak up every minute with her.

Chris and I had a scheduled meeting with the BMT team on Monday to go over details and consent to the “conditioning”  regiment they have settled upon for baby Riley. We were to hear everything that was going to happen, could possibly happen and “there’s a slim chance” this could happen…needless to say we were terrified. We both felt sick on the drive up and while we’d hoped it was from a lack of food we quickly yet not suprisingly realized after lunch that the feelings were still there. At the meeting Dr. Cowan who has been described to me as “the grandfather of transplant”, “a rockstar” and “simply the best” settled in to explain to us the plan he and his team had developed. Because of the CMV we do not have the time to wait to secure an unrelated donor…the virus will soon become resistant to the gansiclovear and at that point we would be in big trouble. We need to get her transplanted, up, running and ready to fight like…well…yesterday. After mapping out our DNA Chris was in the lead as a 6 out of 10 match with me as the standard 5 out of 10…we had already given blood and were being worked up simaltaneaosly just in case but Chris was the closer match so pending all results they decided to move forward with him. Cool. Go time. Dr. Cowan then proceeded to lay out the immediate, latent, definite and possible side affects of the chemotherapy regiment that they had decided on. Ughhh. Not. Cool. Yes…we are ready to move forward, progress is good and all of this means we are one step closer to a healthy baby that we can take home but I don’t think it is possible to ever be ready for what we are about to go through. I think we both thought we had accepted the reality a little more that we really had…whoops. I’m not going to take the time to write out all of the things that may happen, partly because I don’t have it but mainly because it’s too hard and it doesn’t matter. This treatment is what HAS to happen to save her and that is all that matters.

We are strong. She is stronger. We will all get through it. I can imagine the main questions popping in to everyones minds because I know if I were reading this my mind would go there too so I’ll answer those…Yes she will be uncomfortable, yes she will feel sick and yes she will lose her hair. However…yes I will be here to comfort her, yes there is medication to ease the nasuea and yes her hair will grow back and probably be as wild and crazy as Miss Presleys.

Within an hour after the meeting we were moved up to the BMT floor, 7 Long is what it is refered the around here. We knew we’d make it here eventually but were thinking we had another month. Reality sure slaps you across the face once you’re up here. This unit is no joke…its strict, sterile and to be perfectly honest a bit scary. It’s all kind of intimidating but the PCRC was too when we first got there and it quickly began to feel like home so I’m sure 7 Long will too. It’ll take a whole nother’ post to describe the unit, changes and protocal that we have to follow up here…its crazy. The move was scary, the rushed pace in which it happened amplified that but seeing Riley’s face when we walked out of the hallway and how  amazed and curious she was about the new scenary eased the fear. That sweet little baby hadn’t seen anything but the inside of M604 for 7 weeks and to say she was fascinated would be an understatement. Equipped with the cutest little Donald Duck medical mask you’ve ever seen her wide eyes followed the lights down the hall and up the elevator to her new room.

All of our things were left in the ante room as they needed to be sterilized before they could enter the main room (as I said I’ll do a post just to explain the space later), we got introduced to some new staff members and nurses and POOF just like that our next new normal began. I wanted to get Riley chalk full of fomula and off to sleep because the following morning she was having surgery to place her broviac port and so would be unable to eat after 2 a.m. Not feeding a 2 month old baby after 2 a.m.? Umm…torture much?!…maybe more for me even than her! I was anxious as I laid her down but she did really well. She was the perfect picture of PISSED when she awoke at 5 demanding a bottle only to receive cuddles but she succumed to a mixture of my bouncing/tone deaf singing pretty quickly and slept in my arms for the final hours before surgery. I of course laid there wide awake and still as could be in sheer fear of waking the sleeping beast on my chest. I should have known better then to expect her to struggle…she has been such a trooper through it all I’m not sure why I expected the worst…I guess because I am Mom. Once again she amazed me and even slept all the way through the covered bumpy wheelchair ride and right on into the surgeons arms as I passed her over. Surgery went very well, uneventful. She woke up in the PICU, bipassed any and all complications and made sure EVERYONE in the place knew she was none too happy about not having a bottle immediately shoved in her mouth. We made it back up to 7 Long and about 45 minutes later I got the ok to feed her. That little cricket sucked down more formula than she ever then has shot me a mean stink eye and went straight to sleep. Four hours later she woke up with a big ol smile and all was forgiven. Picking her up was a bit like handling tangled christmas lights…this kid has got more cords and wires than I could have ever imagined. While our room is bigger our mobility span is much shorter now that shes attached to her IV pole 24/7 but as always she remains content.

Yesterday was a very long day seeing as I’d only logged about 45 minutes of sleep the night before only to be faced with Riley’s surgery in the morning. Luckily Chris was able to come up and spend a good portion of the day with us. He got his physical, veins checked and was cleared to be the donor pending CMV results. I was freaked out. Here I am now looking at my week to come…Riley will be starting chemo, Chris would be getting twice daily injections to boost cell production which have the potential to cause serious discomfort meaning Presley will most likey be staying with my Mom so Chris could rest. We would all be going through so much and all be seperated. As Mom, that just didn’t sit well. I am used to taking care of all 3 of them and being able to “fix” everything…for a few moments it was all too much. I lost it. Thank goodness Chris was with me and is the man that he is because without skipping a beat or having a meltdown of his own he assured me we would make it, as we always do, we would make it work. Ok. Back to calm.  As I explained in my last update the donor must be CMV positive so donated cells already are trained to fight the infection. Seeing as CMV is present in almost all adults, passed through saliva and the fact that I am CMV positive left us basically NO doubt that he would too…I mean we have two kids, the jig is up…clearly we’ve kissed…how could he not have it? So we were good, we had a plan, we worked out a basic schedule, we had dates…progress, one step closer to home. Hours later after Chris had left Dr. Cowan came in to drop off copies of all the consent forms and also dropped the bomb on me that Chris was CMV negative. Shit. Now back to me as a donor. It doesn’t really matter, clearly we are both willing to do whatever to save our baby it’s just the back and forth that was hard. Another big piece of information I had to hear alone and another thing Chris would have to hear second hand over the phone. We had both thought things were finalized and had really embraced moving forward. I was so upset when I had to tell Chris because I know as a father he was thrilled to do this for Riley, us Moms carry them around for 9 months-it was refreshing for him to be able to fill the role as donor. Once again, he calmed me and reassured me that everything would be okay. Honestly he was dissapointed but comforted by the fact that I do have CMV and that we are still able to move forward with the dates as planned. While now he won’t be the one hooked up to the machines he will be right there at my side getting me through it as he does with everything else.

We have learned that everything is subject to change but as of now…what I have is this. Riley starts Chemotherapy on Sunday the 29th. I start injections Friday the 4th. The harvest of my cells will be Tuesday the 8th. Transplant day for Riley Wednesday the 9th. I will update as I find the moments to sit and write.

For me writing is theraputic but honestly this last week I had lost my words. It was all too much, sharing our journey with everyone through these entries makes it all feel real and I wasn’t ready for reality yet. I am ready now. I think. I replay Chris’ assuring words in my mind “One step closer to home babe.” Okay. Yeah. I’m ready.

A big thank you again to everyone for everything. Positivity, Prayers, Well-wishes…Wanted, welcomed, appreciated.

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 facebookhttps://www.facebook.com/rileyjanebrown

September 18, 2013

IMG_9438So I’ve been here long enough to know by the doctors body language as they walk through the door what type of conversation is to follow. Day in and day out things have been relatively unchanged so usually they just want to know things like the consistency of Riley’s poop and how my morning yoga class went. Today when they walked in I knew they weren’t here to talk about yoga.
Doctor: “Riley’s labs are showing positive levels of CMV.”
Me: “F*#K”
While that may have been an inappropriate response, it was my response…outloud. Whoops. I did follow it with “sorry about that” but judging by the way they were all vertically shaking their heads they 110% seconded my notion. Last week when they told me Riley needed chemo I dropped disturbing amounts of cash at the vending machine…”your kid needs chemo” warrants a Snickers or two in my book. That being said I am pretty sure “your immune compromised newborn now has an infection” guaranteed me a free F-bomb.
CMV is a very common virus that is usually harmless. Most healthy people infected with CMV aren’t even aware they have it. About 90% of the population is infected by age 40…it really is no big deal….unless like our precious Riley you have no immune system. For her little body it is a big deal, a big bad deal. What does this mean? Well…basically…plot twist. Yesterday she was a healthy baby with no immune system, today not so much. The hours following the news were filled will doctors coming in and out of the room explaining the changes in management, treatment, transplant, etc… The unrelated donors that we had lined up are now out the window because they were are CMV negative which is what we wanted before when Riley was not infected. Now that she is CMV positive we need a donor that is positive because that means their T cells are already trained to fight the virus. They are going to monitor the CMV levels over the next couple of days…depending on how agressive the virus is we may not have the time on our side that it takes to secure another donor. In that case we will be deciding to go with either Chris or myself as a haploidentical match and start the chemotherapy as early as next week with transplant to follow. See what I mean by plot twist?
My inital feelings…sheer terror…overwhelming, all consuming, mind numbing terror. Then came the deep breath…I’ve got myself completly trained now to just stop. Stop. Breathe. Ok carry on. I began to digest the news and was able to remain calm and receptive to the information; too much emotion and I miss everything they say. Now that I’ve got my mind as wrapped around this new development as it can get I am ok. While this infection does change things it does not change my role. I am still just Mom. The doctors are doing everything that can be done to stay ahead of this ugly thing and in the midst of that all I can do is continue to just be Riley’s Mom. Feed her well, change her pants, hold her tight, love her deeply, repeat. I have to make sure she feels only love from me, no tension…no stress…no fear. Just love….it’s all you need right? 🙂
She will now be getting an IV medication twice a day to fight off the CMV which will begin tonight, it is generally well tolerated so hopefully no side effects for her. Thursday they will draw labs to see what is going on with the CMV levels now that they have a baseline (fingers & toes crossed for a decline). I will update as soon as I have a better idea of what is next however keep in mind it may change daily at this point. Prayers, positive thoughts, well wishes…whatever your thing is…we welcome them, we need them.
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 facebookhttps://www.facebook.com/rileyjanebrown