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.
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.


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

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.


As always thank you so much for the support. xoxo

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Riley Update

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

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

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

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


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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.



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.

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

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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 😉

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.

Loving her bath this morning 🙂
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

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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!

Snoozin away
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!

p.s. told you it came from rabbits 😉

Chemo Day 6

Yesterday Riley tolerated the Fludarabine and Thiotepa beautifully. She highly enjoyed her 3 baths and will get them again today to get any residual chemo off her skin to avoid any burns. So far her skin is looking good…rashes pop up and disapear by the hour but nothing major. Today she got the Fludarabine again in the morning and then at 11 started her first round of Anit-thymocyte Globulin (ATG). That’s the big one as far as immediate side affects are concerned. Hives, fever and respiratory distress are the 3 most common that we will be watching for. Tons of precautions were taken this morning before starting the round including loading her up with Benadryl and Tylenol. During those meds I actually texted a Mommy friend of mine whom I have talked with before about the mommies who think giving a lil babe Tylenol is ludicrous and are quick to give you the “Oh I would never…” speech on the playground…no judgement on my part because it’s simply not my style but maybe next time for those giving or getting that speech no matter which side you’re on just pause and be grateful you’re babes biggest concern is cutting teeth 😉 Also, not trying to discredit the frustration or discomfort of teething babies…that shit is rough. Mine may be in the midst of chemo but I am still a normal Mom dreading the day her little chompers start making their way to the surface. 🙂 The ATG will run over 10 hours, right now we are almost 2 hours in and so far lil Miss is sleeping away only opening her eyes to doll out a stink eye to the nurse taking her temperature every 15 minutes. She is hooked to the machines where her oxygen levels and blood pressure are being constantly monitored so she’s back to being a stage 5 cord tangled mess…man I can’t wait until I have a cordless baby. Ahhhh, the little things you long for as the parent of a hospitalized child.


The Fludarabine and ATG are the last Chemotherapy drugs she will be getting taking us from today through Monday. Fun fact about ATG…it’s made in rabbits. Yeah you read correctly…rabbits. Fancy, huh? Even freakin Bugs Bunny is helping to save our little Riley!  All these smart doctor folks come up with the damndest things.

Please keep us in your thoughts today and well the rest of the week for that matter…actually scratch that…think, pray well wish whatever it is you do for us all the time 😉 it’s appreciated. Oh yeah, I get my first injection tonight to ramp up my marrow production…from what I hear it’s quite likely to suck. I feel a bit of pressure to handle it with grace…my 3 month old is kind of a show off when it comes to that, can’t let her down.  Wish me luck! xoxo

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Chemo Day 5

So here we are on day five just rolling right along. Riley got her last dose of Busulfan overnight and while she tolerated it wonderfully I am glad we are done with that one. She received Busulfan every 6 hours (9 a.m.-3 p.m.-9 p.m. and 3 a.m.) for 4 days.  Along with the evening dose at 9  came the pharmacokinetic studies which is a fancy term for blood draws. They monitor the levels of the chemo in her blood to follow how her body metabolizes it and adjust the dose so she receives the exact amount they desire over the course of her treatment. Blood would be drawn 15 minutes prior to the chemo, 15 minutes after, 30 minutes after, 1 hour after, 3 hours after and then again at 6 hours after.  I’m sure that clears up any doubts you had about my lack of sleep 😉 She is a champ…she would sleep through the chemo and the studies, Mommy however not so much…with all the beeping, footsteps, rubber glove removal and door closing there really is little point in even attempting. The nurses are so wonderful, I don’t want to sound like I am complaining…I am not by any means, just giving a glimpse of what this lil party we’re attending has been like.  Along with the chemo itself she receives additional meds through her IV…everything from anti-seizure infusions to Zofran for nausea and Benadryl to help relieve the itchiness caused by her rashes and that is just to name a few. On top of those she is still putting down between 3-5 oral medications daily. This lil baby is chalk full of all sorts of goods and handling it like a pro.

Photo courtesy of the wonderful Meg Perotti


Today she started the second phase of chemo…phase one drugs made room in the marrow for donor (my) cells  while phase two drugs begin killing off the current cells in her body. I’m sure you can guess that phase 2 is likely to be a bit more uncomfortable for little Riley. The upside is she only gets chemo twice a day now and the blood draws are minimal. Fludarbine and Thiotepa and are the two drugs she will be receiving now. The Thiotepa excretes through the skin and so protocol will be to bathe her 3 times daily to get the chemo off of her skin as it can cause burns. Luckily for all involved Miss Riley LOVES bath time especially since my dear friend Courtney hooked her up with a big comfy tub and towels last week. Hospital textiles are simply atrocious. 😉 Bed linens will also be changed with each bath to reduce the spread. So basically our days now will be eat, poop, bathe, groan, giggle, sleep, repeat.


Life down in the PCRC was pretty uneventful, she had some oral meds and vitals twice a day but for the most part it was all down time. There is not really any down time now that treatment has begun. Besides the IV and oral meds there are the creams…oh the creams. This kid has got the cream regiment of a hollywood housewife I swear, she’s got a cream for every little bump, blotch, crack and crevice. Desonide twice a day on all rashes, Bactraban on her back 3 times a day, Bacitracen on any open sores as needed, A & D ointment on top of all of those to seal, hydrocortisone and desonide on her face as needed and then there is her booty regiment which evolves daily depending on how her diaper rash is doing. IV meds-check, oral meds-check, creams-check…oh yeah then there is the mouth swabs to be done 4-6 times per day to reduce the discomfort of the mouth sores caused from chemo and also those multiple baths , bandage and linen changes. I’m telling you we’re busy around here folks 🙂 The beauty of it all is that she is only 3 months old and knows no other way…to her life is Mommys undivided attention plus tons of friendly faces oohing and awwwwing at her around the clock…not too shabby from her perspective.

Riley’s current state as I update 😉

After today we only have 4 more days of chemo then a day of rest and that takes us right into transplant day. We are getting so close. I continue to thrive off of the support we are given on a daily basis, thank you all so so much.

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