Riley, Riley, Riley

First a big fat apology for the lack of update but in all honesty it was for thoughtful reason. All last week I kept waiting for them to come in and deliver me some good news so I’d have that to break my silent streak but as the days went on that moment never came…instead the bad news deliveries arrived as though they were freakin scheduled. Saturdays delivery…Riley went ahead and picked herself up another hurdle in the form of the Rotavirus, a nasty tummy bug that most little babes have been vacinated for but since she came to us immune system-less she had to skip that set of shots…fast-forward to a few months later and here she is infected with it. Shit. Literally. A week into this and I do declare that Rotavirus is a fancy term for “poop soup” because that is all thats been in this girls pants. TMI? Sorry. Count your lucky stars this blog isn’t scratch and sniff. They were a little vauge about the severity of this virus the first couple of days and I couldn’t quite figure out why, it was like they wanted to say to me “it’s not really a big deal” but couldn’t form the words. Well…here’s why that is. For where Riley’s counts currently sit the Rotavirus isn’t the end of the world however should she now develeop Graft vs. Host or pick up any other sort of infection that requires antibiotics, steroids or any other treatment that lowers her counts we could be moving from the cool end of the pool to the hot water side pretty quickly. Make sense? Sooo yeah…baby girls system is at it’s max. We need no more hurdles, challenges or battles to fight…we’ve got enough so shove the rest of them up your ass universe. Please and Thank You.

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Mondays delivery…well…my sweet request kindly went unanswered when her lab results for CMV came back positive. Grrr. Same as last time, they’d lowered her dose of Ganciclovir to once daily and after a week of that the CMV popped back up. Our plans of switching her to the oral form (which isn’t as hard on her system, counts or T-cell function) went out the window. While the Ganciclovir does a helluva job at slowing down her count increases and T-cell function (not good) it has proved to keep the CMV under control (good) that’s the virus that can take over and become a total game changer for Riley. I so badly just want that one to go away…it’s like this evil lil gremlin perched in the back of my mind, a constant reminder of how fragile she is. Riley’s syndrome, illness, disease, deficiency, whatever the hell you want to refer to it as is such a  balance of meds to progress…the meds keep her from getting sicker but slow her from getting better. Annoying, right? Everyday we are in a catch 22, stuck between a rock and a hard place and every other metaphor you can think of for “shit situation”. They’re going  to try a different medication this week…it’s another twice daily that will be administered through IV, hopefully it will be effective in keeping the CMV at bay but not hinder the counts/function so much. Stay tuned.

 

Last but not least for the not-so-good news train…we got word that her latest T-cell function test came back and still no improvement. So there it is. Rotavirus. CMV. No function. Ho ho ho. How’s all that for holiday cheer, huh? Pretty sure this time last year my stresses went something like this “Ughh…I procrastinated on shopping and now parking at Target is going to be a bitch.” and “should we open the good wine or the REALLY good wine first?” Huh…there’s that perspective thing again. 😉 While I in NO way welcome all these real big issues we are facing this year I do find myself appreciating the gift of “don’t sweat the small stuff” that I’ve been given.

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Last week was certainly a long one…between all of that happening and then not being able to go home over the weekend to see Presley…it was one of the toughest in recent months for sure. Luckily I was able to head home Wednesday and enjoy a few days of that wild 3 year old and a few nights of beeps/vitals free sleep. That re-charge was much needed. Now all I need is some good news for little Riley…even no news, that I’ll take as well just no more bad. With all that is going on in her little body she’s still been relatively unphased. Energy levels have been a bit lower during the day and she definetly has a harder time sleeping at night on account of her grumbly tummy but other than that she is her happy self. Shocker, right? This baby can smile through just about anything…you really wouldn’t think it possible for so much to be wrong with her on the inside when her exterior is so damn adorable. I sure wish her smiles were a sign of improvement but I think we all know that if a grin was enough to get us out of here we would have been turned away upon arrival…4 months later, 4 million times cuter. Still. Here.

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For those of you with a little room left on your Christmas list this year please feel free to add “functioning immune system for Riley”. Hey, worth a shot right? 😉 I will do my best to update again soon and hopefully this time with some “woo-hoo” news. Thank you all again so much for constantly keeping Miss Riley and the rest of our clan in your thoughts. 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

GoFund Me:

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

Amazon Wish List:

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

Target:

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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.

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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

Transplant Day!

Today is the day. I am sure you can imagine that a whirlwind of emotions have been flooding me over the past 24 hours, I’m usually one to keep it together, it’s been a while since a tear escaped but last night I had a bit of a cry fest. I think it all just hit me…I was still in pain from the shots, uncomfortable from the apherisis procedure, amazed at Riley’s happy spirit, and then excited/scared/worried/anxious about the coming day…big ball of emotions. Solution…stood in my ante room, had potato chips and chocolate cake for dinner washed down by a big glass (and by glass I mean plastic cup) of cheap twist top merlot and put my ass to bed. Take THAT tears.

Yesterday morning I got my last shot and then went in the for the collection process, Chris was here with me anxiously bouncing away. They needed me to be very warm to help with the blood flow so they lined my back with hot packs and covered me in piles of warm blankets…so far it kinda felt like a spa day. Then she came out with the steel catheter…nevermind…this spa sucks. The steel line was to be placed in my left arm and the blood would flow out of me and then into the centrifuge where the cells would be seperated. They pulled out what they call the buffy coat which  contains mostly white blood cells and platelets and is what will be T-cell depleted and given to Riley. They also collected plasma which I guess is essentially food for the cells they will be transplanting. Everything else made its way through a series of tubes and back into my right arm. They had hoped to place a standard line in that arm so that I would be able to move it during the procedure but according to the nurse “you have got some thick skin girl”…damn straight 😉 After 2 failed attempts…steel catheter it was. Bummer…I wouldn’t be able to move either arm for almost 5 hours. Lucky for me I had Chris, the best nose scratchin, pretzel feeding, jamba juice servin support system imaginable.

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The night before the apherisis I had a nurse who was training and so she had someone shadowing her. Generally in that situation the shadow knows what they are doing…she did not. A clueless pair. I have been here two months and recieved AMAZING care from every nurse that stepped through the door…these two were just a mess. I maybe got a combined hour and a halfs sleep courtesy of their bedside manner and was wide awake from 4 a.m. until I had to leave for my shot at 6:45. Sidenote to any of you nurses out there…please do not say “Oh my goodness she has just the most beautiful hair” over and over to a chemo baby…maybe compliment the little cutie on something she gets to keep….smile, eyes, anything. Grrrr.   When Chris got here to meet me I was so upset, so frustrated that I hadn’t gotten any sleep. I was tired. I’m always tired but I was like class A wiped OUT. My upbeat and positive attitude was exhausted and the way things were going it was planning to take the whole damn day off. Looking back on it today I find myself being grateful for my sleepness night. Crazy, right? Well honestly if it wasn’t for Tweedle Dee and Tweedle Dum I would not have been SO exhausted that I was able to sleep through the majority of the apherisis. which isn’t exactly a comfortable process.  Four and a half hours of looking like a vampires dream and I was done, they had proccessed 18 liters of my blood and swiped 220cc’s of the goodness that is to be Rileys transplant. Huh. Weird. Amazing.

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The yellow fluid is the plasma and the red is the buffy coat for little Riley!

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

The nurses are AMAZED that Riley handled the last round of chemo reaction free…apparently that just doesn’t happen. But it did and I know now more than ever that she can handle anything we throw her way. She enjoyed her day of rest yesterday, slept great last night and woke up ALL smiles this morning. She is ready. Bring it on transplant!

 

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

Chemo…Day 8

Perspective is a wonderful thing. The way I relay our story sets the tone for the conversations that are had about our family outside of these walls. Our situation is sad and that simply goes without saying so lets do that…lets not say it. I don’t want the tone at our friends dinner table to be “oh poor little Riley” I want…”can you believe how amazingly strong Riley is?”…not “SO sad she’s going through getting chemo” but “GO Riley, kick chemo’s ass” That is important to me…I want as much postive spin as possible, it’s how I’m getting through it, it’s how I am enjoying the days I have Riley as opposed to being brought down by our surroundings. I have made up little goofy games to go along with the beeping monitors that make Miss Riley grin from ear to ear and have embraced the fact that I have about 100 full time “nannies” in the form of registered nurses and doctors. It ain’t all bad 😉

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Cuddles 🙂

We are on day 8 of Riley’s chemotherapy conditioning…tomorrow is the final day, rest on Tuesday and transplant Wednesday. Riley made it through the first 2 days of ATG with no reactions which is a bit uncommon (but good), she still has 2 days to go but so far she is managing beautifully. Yesterday she was a bit more restless than usual but after looking at her CBC counts her hemoglobin levels were dropping and that plays a big part in her wariness. They have been drawing so much blood to monitor the chemotherapy levels in her system that it’s made her a bit anemic and so they ordered for another blood transfusion. The next 2 weeks are when she will really begin to feel the effects of the chemo as her cell counts start to drop, they will continue to medicate and keep her as comfortable as possible.

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Loving her bath this morning 🙂
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She has quite the post-bath cream regiment 😉

My conditioning started on Friday evening. I’ve now had 4 out of the 8 Neupogen injections and my goodness those things sure do know how to make a girl uncomfortable. G-CSF (Neupogen) is a man made version of a certain natural substance found in the body. It works by stimulating the bone marrow to increase white blood cell production. It is a very strange sensation, a weird pain. Basically…every bone in my body is aching and throbbing, it’s instense. It’s official, my 3 month old is tougher than me. I am able to take Tylenol however it doesn’t help a whole lot. Luckily last night I had the ninja nurse so I was able to get some sleep. Yes, I referred to a nurse as a ninja…he is amazing, I am the lightest sleeper in the world and he manages to glide in and out of the room without making a peep…it’s a true talent. Let me give an an example…he was able to give Riley a blood transfusion last night without EITHER of us waking up…told you…NINJA.

We’re 2 hours in to her chemo for the day and so far she’s been sleeping soundly which is impressive because the first 2 hours they take her vitals every 15 minutes. So far it’s been a lazy Sunday…hoping that continues!

Thank you all for following, for caring and for continuing to provide enormous amounts of 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

Quick Update

We are 7 1/2 hours into the ATG round and so far Riley is doing great! She has slept the majority of the day including snoozing through 90% of her bath…no joke…I would post a picture but no need to put photos of baby girls bits up on the internet, ya’ll believe me and I’m sure can invision how pathetically adorable she looked 🙂 She woke up near the end confused as all get out but very happy, she is a trooper with a capital T!

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Snoozin away
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Post bath happiness 🙂

I went and had my first injection of Neupogen which I will now be getting twice daily until they do cell collection on Tuesday. The Neupogen will basically ramp up my stem cell production so that I will have plenty to share with little Riley Jane. Apparently side effects will be bone pain, headaches, dizziness, nausea and the occasional spleen rupture…I’ll do my best to avoid that last one as it would be quite inconvenient at this time. The shot itself wasn’t bad at all…it was in my belly so that nice post pregnancy tire I’ve been rocking around my waist really came in handy, all that jiggle masked the sting of the poke…fantastic! 😉 So far no major discomfort, I just feel a bit fuzzy. I did reserve a room at the Family House down the street in case I become too uncomfortable I’ll just sneak away to moan and groan while someone else stays with Riley.

Hopefully the evening will continue on uneventful with little to no discomfort for both Riley and myself. Wish us luck!

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p.s. told you it came from rabbits 😉