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:
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You can also follow Riley’s journey on Facebook:
https://www.facebook.com/rileyjanebrown?ref=hl

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

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

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

For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com

Thank you, thank you, thank you

Amazon Wish List:

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GoFund Me:

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You can also follow Riley’s journey on Facebook:

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

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

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

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

For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com

Amazon Wish List:

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

Target:

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

GoFund Me:

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

You can also follow Riley’s journey on Facebook:

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

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

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

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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:

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

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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

 

Bye Bye Hair

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

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

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

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

http://www.childrenwithhairloss.us/

http://www.locksoflove.org/

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

Thank you, Thank you, Thank you

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

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

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

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

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

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

Day +7

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

Nurses monitoring vitals during transplant
Nurses monitoring vitals during transplant

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

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

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

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As always thank you so much for the support. xoxo

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

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

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

Riley Update

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

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

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

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

 

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

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

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