1,2,3 Presley…

So it’s Presley’s birthday. She is 8. Today. I have an 8 year old. I can hardly believe it. A couple weeks back when I wrote the post about her I sat her down on the couch after finishing it and said “Hey so…I wrote a post about you for Riley’s blog?” A stunned “About ME?” Was her response. I dropped my head because that response confirmed my fears…she was surprised she was being seen. “Yes baby, about you…can I read it to you and then you can tell me if you’re okay with me posting it? I won’t if you’re not, okay?” Her face settled into a shy smile and she nodded curling up next to me.

I’ve said time and time again I don’t often read what I write, hell I barely proof read and edit which I’m sure as readers you’ve picked up on with the overabundance of curse words and typos. The content was heavy and I didn’t realize how heavy until I was reading it aloud to my subject…my Presley. My voice cracked in all the parts that likely made y’all cry, she moved closer to me with each paragraph shifting her gaze from following along with the words and stealing glances of my face. She let out a shocked “MOMMMMM!” when the words “fucking champion” came out of my mouth to describe her…”Whoops sorry kiddo, I know I know…but I mean…you WERE” She got emotional too…she sat up taller during the bits about Riley being so broken up and terrified seeing her come out on the stretcher…it was like an automatic reaction to be brave at the mention of her sisters pain. A task she has taken on for Riley’s entire life. She laughed too…a lot…partly because of my use of inappropriate language but also because like me our lives sometimes are so unbelievably bizarre that all you can do is laugh.

I finished reading and said “So?…what do you think?…Can I share it?” Her face was glowing as she nodded her head yes and her shy smile transformed into a full grin. She was proud of herself. I often don’t know how I feel about a thing until I write it…that day I also learned I don’t know how I REALLY feel about a thing until I read it aloud. Clacking my fingers across these keys is therapy for me…reading those words to her was therapy for us both. So today on her birthday…therapy session round 2. Writing now, reading to her later.

At the end of the post I mentioned Presley’s involvement with The Mark Makers and even shared the images that she shot and processed. When asked what she wanted for her birthday this year her immediate response was “A camera exactly like Moms”…naturally she wants work equipment for her birthday, totes normal. Her jaw dropped at the price tag and her wishes turned to her more reasonably priced desires such as desk supplies and a lamp. I’m not kidding. And yes, she’s 8. Her interest is not limited to the photography aspect…she’s all in. As I said she asks a million questions…I always answer but half the time figure she tunes me out as many of the details of running a nonprofit are painstakingly boring. I learned a couple weeks ago that she absorbs it all. I went to pick her up from her grandparents and with a cheeky grin said “Mom I’ve got a surprise for you.”

She bounded over with a stack of cash and slapped it down in front of me.

“What’s this kiddo?”
“It’s my donation for The Mark Makers.”
“WHAT?”
“I emptied my piggy bank and rolled my change and Grammy took it to the bank and this is how much I’ve got $128…oh and it was all my tooth fairy money too.”

I was floored. What kid donates their entire piggy bank AND their freakin’ glitter covered tooth fairy money?! I explained to her that she DID NOT need to donate any or all of her money but she was insistent. “Seriously Pres, I am so proud of you and this is amazing…how about you keep some for yourself though, ok?” She reached over grabbed a crisp 5 dollar bill and said “Ok, fine…but the rest is The Mark Makers” While the fact the she did this at all made me beam with pride the idea she approached me with a few days later left me speechless.

“Hey Mom? You know that money I donated?”
“Yeah Kiddo.”
“Well remember that day you were signing up for the matching thing?” (she was referring to an Employee Matching program that I signed up for so that employers will match their employees charitable contributions…you know one of those questions that I answered that I figured went right over her head)
“Well…since I work for The Mark Makers and that’s who I donated to it doesn’t make sense for them to match it but do you think other people would?…Like I bet I could ask Mark (our friend/neighbor) and he would…or maybe like…if you wrote about it on Facebook somebody else would too.”

I. Was. Speechless. Like for real.

She broke the silence…“Mom?…whadya think?”
“I think that you are brilliant Presley…I think that you are absolutely brilliant”

I told my Mom the story and she was the first to match her donation and honestly the look of pride on Presley’s face when she was handed that check was just….gahhhhhh…so cool. She stared at it and then confidently handed it over to me…”Here ya go Mom…for deposit.” This. Kid.

The complexities of the whole thing…the fact that she really listens, absorbs, crafts plans and then finds ways to implement her ideas. I mean. Good Gawd. So here I am…on her birthday…telling this story and making the request on her behalf.

Let’s see how many $123 donations we can get so Miss Presley can really rub in my face how much better she is at running the show. 😉

*Donations can be made through the Facebook Fundraiser, on The Mark Makers website or via check. Donors…please send an email to contact@themarkmakers.org with your name and address so Presley can mail you a “Thank You” card…I know she will be very insistent on this. 🙂

And some Presley throwback favorites because…WHERE did my little girl go?!?!?!

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Ready, Set, School…

So it’s that time of year…back to school or beginning of school. A time that brings up a pile of emotions for all parents…joy, fear, excitement, worry. For me…it’s brought up them all in a seriously messy way. A few weeks back during a follow up visit with Riley’s BMT doctor Riley showed up wearing one of Presley’s finest out-grown school uniforms and was all excited to ask if she could go to school. Her doctor hesitated…”Like this year?…2018/19…I’m not sure…maybe next year?” Riley (who has been dying to go) accepted this let down with a tiny exhale and a “Mmmmmmokay…maybe next year” and went right about playing for the rest of the appointment. I was flooded with guilt…guilt because I knew she was ready but that I was not so this news was sort of well…welcomed. And then came my amazement…amazement once again at her ability to let life happen to her and move right along. She wastes none of her precious time on things like disappointment…it’s kind of incredible. And then sadness…because well…now that I was told she couldn’t go the news was no longer welcomed.

 

Fast forward to her doctors all having a meeting on the matter and I get a call “We’ve all agreed…Riley can and SHOULD go to school this year.” Yay! And then. Fuck! Were my immediate emotional responses. See unlike Riley I have not mastered the art of letting life happen to me with fun acceptance…I waste enormous amounts of time on feelings. Ok maybe not enormous but enough. But ultimately I accept. I accept that this is what’s best for her…best for her health mmmmm mayyyyybeeee but for her quality of life…absolutely.

Registration for school then came…I did the portion I could online, got together all the normal paperwork and then all the “Riley” paperwork you know because she’s not “normal” and had my meeting set. That morning I woke up filled and I am talking FILLED with anxiety. Like battling a looming panic attack anxiety. You see I don’t often have to explain Riley to people…we live in a bubble…a bubble of family and friends who know all about her and doctors and specialists who are why she is here. School district registration staff…they’re not going to know. They don’t reside in my bubble. I am going to have to explain. So. Much. Explaining. I don’t often have that come up because well…bubble. But this…this was enrolling her outside of the bubble and I was (and still am) fucking terrified.

I got to the office, turned in the necessary “normal” paperwork and then tossed out some verbal cliff notes regarding her condition and asked if there was anything else I would need to provide for the school. Already shaking and swearing off tears…see heres the thing with me…I don’t cry often and when I do there are 2 very clear forms…1.) Panic attack can’t breathe sobbing spells (maybe once a year) and 2.) Uncontrollable yet functioning…tears escape from my eyeballs and roll down my cheeks while I pretend it’s not happening and go about whatever task is in front of me. I could already feel those coming…I’d been fighting them off all morning and was fitna lose. I was handed some forms to fill out and made my way to the brightly colored plastic chair to get started. Okay you can do this. Yellow medical form. On it were the basics…you know the little line for any medical conditions they should know about and a space (ie 2 inch line) for medications. Tears. Right on que. Fuck. This form was meant for someone with a bit of asthma. My Riley. Our Riley. There is no space for her on this form. There is no space to explain what she has been through. I’m going to need another piece of paper…make it 2. Actually no…there is not enough paper in this entire fucking office to adequately explain what she has been and continues to go through. Uncontrollable function. I wrote words and wiped tears. Write. Wipe. Write. Wipe. Mind you I’m aware at this point how insane I look…you see there are piles of other people in this room in their own brightly colored plastic chairs and not a one is crying because this is not typically a crying event. I look insane. I am insane. This is insane. As I finish filling out what I can I prepare myself to ask for a sheet of paper to list her medications. I sat there doing all the breathing exercises I’ve learned over the years trying to get the stupid ass tears to stop falling before the registrar returns. Here she comes…pull it together McDonald.

“So unfortunately…your school of choice is full…there is no space…Riley will have to be enrolled in another school and placed on a waiting list.”

My head literally dropped and all that breathing work undone…more tears. I looked up at the woman and said “I just…that won’t work…I can’t do that to her…this is her first day of school…ever…she HAS to be where her sister is…I can’t put her in some random school…I just can’t.” She responded back something along the lines of “Well I know but you waited so long to get her registered and so there just isn’t anything we can do.” My head dropped again. Fuck. Now I get to explain that I’m not just some  irresponsible parent who waits until the last minute and then gets entirely too emotionally worked up over school placement. “I didn’t want to wait…she was just medically cleared to go to school…” I trailed off into further explanation…very calmly explaining Riley…explaining what she’d been through. “Let me get my supervisor.” My head dropped again. I hate being that person…that person that needs to speak with the supervisor. I wish I could have just strolled in, handed over the bevy of colored forms and walked on out months ago but here’s the thing…I will never be that person. Riley will never be that person and I need to get over that right now because real school life for her hasn’t even started…hell I haven’t even completed the registration.

As I waited I just kept hearing over and over in my head “There is no space for her. There is no space for her.” No there’s not…no space on the form, no space in the school. No space. I’m out of space. I don’t think I can do this. How am I going to handle this. “There is no space for her.”

When the supervisor returned I was no where near any sort of ability to turn off the tears. I quietly explained that to her before our conversation…”I’m sorry…I’m ok, all this…the tears, I’m ok, I really am. This is just…I just…this happens…I’m okay…what do I have to do to get her in this school?” She explained the wait list, the fullness, all the things. Through pleading and honestly pathetic sobs I managed to very slowly get out “Yes, I am familiar with how this sort of thing normally works but Riley is not normal so I’m going to need an abnormal solution…everything in her life has required an abnormal solution. I need her to have this first day of school, at THIS school, with her sister…this is…she…she deserves that. I need to make this happen for her. Please.” The woman understood. Well…no she didn’t. I mean…she was understanding. Very few actually understand this because in order to you would have had to live it. But understanding…yes, she was certainly that. She left and returned several times…each time leaving me sitting there in a puddle of self-pity, fear, frustration, exhaustion and tears. Told ya…I was messy. On her final return she explained that she put in a call to the principal, that she’d left a message and that the principal would be the one to make the decision…she would call me Monday and let me know. I thanked her and so very ready to take my crying fit to the privacy of my parked car I then remembered that I still had to ask for that additional paper to list her medications. Damnitt. Head drop again. She brought me a blank page and as I filled it from top to bottom with her medications and all their dosages and frequencies her face softened. With every line she watched me write she understood a little more the magnitude of Riley. I did too. You see I pull her meds up on the daily without ever thinking about it…it’s second nature…but writing them all down, that reminder of what all it takes for her…it’s heavy and I was all out of strength for heavy.

I walked out feeling utterly defeated. There’s no space for her. There’s no space for her. I need there to be space for her. There has to be space for her. The next two days were hard. When I break it takes such a physical toll on my body. I’ve learned to give myself permission to be messy and found ways to slowly find my way back to even ground. By Sunday I knew there would be space. I knew it would be ok…that it always is but that the road to “ok” isn’t paved for us…it’s rough and rugged and a lot like off-roading in a Honda civic.

I got the call Monday morning…she’s in. There wasn’t space for her but they MADE space for her. There is now space for her. Riley starts school tomorrow. She is busting out of the bubble and into the cesspool that is public school Kindergarten. Let the record show I am terrified and overwhelmed and not at all ready but most of all…I am my most favorite emotion of all time…grateful. Whether I am ready for it or not there is space for her. And Riley…Riley is ready and that is all that matters. Go Riley Go.

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Presley Update

I know the Riley updates are few and far between these days but the insight as to how Presley is doing…that’s non existent. She is such a huge part of this journey and quite frankly I’m a bit ashamed for not shining a big ol’ spotlight on how amazing she is. This past week that realization hit me…hard. She had a hospital stay of her own this year that I never shared…I wasn’t in a head space to write at the time and as I’ve said I’m slowly finding my way back to this screen. We all talk about Riley’s strength but let me tell you…Presley is every bit as badass.

Back in the Spring while we were weekending in Pebble Beach…what seemed like a common cold turned into a concerning cough and within about 20 minutes she was beyond lethargic and barfing into a bag while we changed course from the park to Urgent Care. My Mom and Riley sat in the car as I carried her in…I was told the wait time was an hour but as I sat there watching her breath move into her belly I realized I’d only ever seen one person breathe that way before…Riley…as her lungs collapsed. Was this PTSD? Was I projecting the seriousness of Rileys condition onto my “healthy” one? Possibly but that’s just not typically my style so I went with my gut, got up and insisted she be seen right away.

The doctor took one look at her and then locked eyes with me “Ok, Mom I don’t mean to scare you but…” …I cut her off…”I know…call an ambulance.” She turned on her heals and rushed to the front desk instructing them to get an ambulance with a respiratory team there right away and then came back and started breathing treatments in between her bouts of vomiting. My phone had no service in the room so there was no way to let my Mom know that her and Riley were about to see Presley wheeled out on a stretcher. Fuck. That’s not going to be good. I heard the sirens within minutes…as the clinic doors opened I saw the ambulance was pulled right next to my car. Riley screamed “PRESSSSLEYYYY” as she caught a glimpse of her face shrouded with an oxygen mask…I rushed over to them and tried my best to calmly explain to Riley “Presley’s ok…she just needs some help with her breathing and they don’t have the equipment here so we are going to take her up the street to a hospital.” She frantically responded “But Mommy, they don’t know her case…she has to go to UCSF…Mommy she doesn’t know how to do this…let me go.” [heart shattered] “Riley…baby…Presley doesn’t have “a case” she can be seen anywhere…she’s going to be just fine…I promise…she’s got this…I have to go with her now…I need you to be strong, ok? You guys are going to follow us.”

I hopped into the front seat of the ambulance and pulled out my phone to call Chris who was back in San Jose. “Hey.” He knew immediately something was wrong…”What is it Alissa?” …”Everything is going to be ok but I’m in an ambulance…with Presley.” …”What?…with PRESLEY?”…”Yeah…I know…it’s weird.” I gave him the cliff notes and told him to head down…Riley needed him. I hung up. Fear hit me hard. Harder than it does with Riley. My body knows how to respond to Rileys scares but this…I was thrown. Talk about a plot twist…was I going to lose Presley? Is THAT where my life leads next? Stop. Breathe. Right nostril. Left nostril. Breathe.

We got to the emergency room and Presley never once complained…after a pile of steroids and breathing treatments she was back to alert and honestly…a fucking champion. They placed an IV she didn’t make a peep…not one. She didn’t whine or balk at any of the poking and prodding the doctors did or fuss about the nasty meds she was choking down. We’ve always joked that we’re “lucky” Riley is the patient because well…Presley loses her mind after a simple toe stub, has got a flare for drama and holy hell is she stubborn but no…she proved not only me wrong but herself as well. You know that whole “You never know how strong you are until being strong is the only choice you have” thing? She had no choice and she nailed it.

After several hours we ended up being transported in another ambulance to Kaiser Santa Clara…from the passenger seat I listened to the sounds of my “healthy” kid as she teetered between barfing and chatting with the seriously cute EMT the entire drive. I called Riley’s team on the way and explained what was happening to see if she needed to be on an additional prophylactic meds. The driver looked over at me after I hung up and said “I didn’t mean to ease drop but it makes a lot more sense now why you are so calm.” Yeah…not my first rodeo man. It was however Presley’s and she was just amazing.

Pneumonia and Bronchitis was the culprit…steroids and an inhaler the ultimate savior. It is truly amazing how fast a body can turn, how your breathe is really so fragile. I am so grateful I knew what to look for. Had I not seen that breathing in Riley before I don’t think I would have acted so quickly…been so insistent.

The whole experience ended up being a total blessing. Hearing Riley and Presley talk the next day was amazing. For the first time they were given the gift of the others perspective. They held each other so so tight and sweetly exchanged conversation…“Presley I was so worried!”…”Now you know how I feel EVERYTIME you’re sick Riley!” They discussed all the details of X-rays, Albuterol, ambulance colors and rolling around with an IV pole…they related…they could relate. They both agreed that it was easier to be the patient than the one home worrying. What a gift.

Presley still takes a back seat to Riley’s illness a lot…it’s just a fact…we all do. But she got a chance to see what shotgun was like and oddly enough I am so damn grateful for that. She got to see me walk away from Riley and care for her. She got to be my patient. She got to show me how strong she really is. I see you baby girl. I see you. Go Presley Go.
**Sidenote…Presley is very involved in The Mark Makers…she’s very clear that she will be running it one day so I’m pretty sure is making sure I don’t screw it up before she gets her chance 😉 She asks a million questions, is a fantastic sounding board/brainstorm buddy and is quite insistent on me beginning her teachings now. Last week she tagged along on infusion day and captured some shots of Riley and I. She then requested I teach her to edit them. This. Kid. She is such a little creative…such an entrepreneur…such a boss.

All images below were taken and edited 100% by 7 year old Miss Presley. I mean.

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Update, Thoughts, Thanks & Love

*Riley is fine…home and fine…just a little up front disclaimer for those freaking out because I actually sat down to update. 😉


I did something tonight that I never do…I sat down and forced myself to go back…to read my words. To read what you’ve all read. Writing for me has always been so therapeutic and aided my ability to wager the storms. Reading has been too…but not my words. Others…non-stop, I am typically reading and/or listening to 3-5 books at a time. But my words? I avoid each and every letter like the damn plague. It hit me tonight that that’s likely not a very healthy approach. Ok, ok almost 5 years later I’m just seeing that…but at least I am…thanks self-reflection, yoga and therapy…y’all are paying off. Maybe that’s why I stopped writing…maybe I knew I needed to read my words as opposed to constantly typing out new ones but wasn’t ready. Why I felt ready now I have no clue but here I am…perched on my couch composing myself to type after enduring the painful inhale of my past entries.

Holy shit…we’ve been through the ringer. Like for real. I mean…I knew that…turns out it is my life and all but it really does get to a point where it feels like a story I tell and not a reality I live. I can’t believe it has been almost a year since I have updated…all in all Riley has remained on a path that while rocky has been less of a constant uphill and more riddled with switchbacks that help manage the climb. If memory serves correctly we’ve had a couple more ER visits, ambulance rides and 1 (maybe 2) re-admissions since I’ve posted but she is sleeping soundly here at home tonight and that is something I will never tire of being grateful for. She continues to gulp down an impressive cocktail of medications multiple times a day that both protect her from this germy world and attempt to keep the havoc her own little body tries to wreak on her at bay. She also continues to be the most badass patient in the world…she LOVES and I mean LOVES going to the hospital. Like excitedly shouts “SECOND HOME” the minute we pull off the freeway and she sees that colorful little logo of kiddos plastered across her 6th floor savior. There is zero fussing…she handles all the pokes and prodding like she was born for it and thank goodness because apparently she was. She is happy as ever, more grateful than most and continues to blow our minds with her resilience. And yes…I still want to be her when I grow up.

When I sat down tonight I just randomly clicked on a few posts…I wasn’t sure how I was going to feel or what exactly I was looking for in my own words. Some brought up nothing, others sheer joy and gratitude. Some knocked the damn wind out of me, most I don’t even remember writing. I laughed at how blunt I am…good god I really don’t have a filter…potty mouth, YES…filter, NO. I knew that but actually reading the shit I’ve put out into this world was humorous…which was useful because I also cried…a lot. Way to break yourself McDonald.

The last one I read though…it got me here. It got me to write again. And that was the goal. To feel something, to remember, to find my voice and let go of the fear of using it. It was this one…one I had published back in March…I think it was exactly what I needed to read. So much of it still rings true. My biggest struggles remain. The constant feeling of not being enough. The worry of how to manage it all. The fear that I am going to fuck them up. Reading it though reminded me how far I’ve come…how far we’ve come. I didn’t just say those things and then not do anything. I’ve done a lot that I didn’t really even realize to grow since then. Lately I’ve been beating myself to a pulp with “how much further along I should be” and ruminating on the qualities I lack and the areas I feel I’ll never improve. Being able to look back on my feelings in March I can see that I am ok, I am going to be ok…we are going to be ok.

I was searching for so many things then…answers to so many questions and confirmation to so much doubt. The reflection provided by reading that post gave me a few serious gifts tonight:

  1. I am no longer the mother waiting for my child to get sick again and I didn’t know that to be true until I re-read my words. I haven’t been that person for a while now. Am I still in touch with the reality of her condition, yes…but am I anxiously “waiting for it”, NO, I really, truly am not.
  2. The pressure I put on myself is still immense but I have sought out and applied a pile of coping mechanisms since that anxiety infused entry. I’m still an anxious mess…like a lot of the time…but thanks to an admission that I needed therapy, the actual going to of said therapy, meditation and every Brene Brown book ever freakin written I’m certainly shaking my way through days smoother than before.
  3.  I figured out the “work”bit. I stopped trying to pour my liquid life into a 9-5 mold meant for solids. I poured my heart and soul into figuring out how to create something that could serve both my creative/entrepreneurial spirit as well as the scheduling/needs of my medically complicated little super hero. The Mark Makers now exists…from absolutely nothing other than an idea it exists. It is officially a 501(c)(3) non-profit organization and I’ve photographed likely close to 100 children since that March post. My girls know that work is apart of me…I’ve stopped questioning myself on that front…I am confident that they will not grow to resent my choices but go out on a limb and make big ones of their own.

Biggest take away…I’ve overcome some serious fears, fears that were debilitating and in overcoming them they became motivating. I don’t want that to stop, I don’t want to forget that. I never again want to be afraid to revisit the past or terrified of the future. I want the present and it’s a damn good thing since that’s all we’ve got. Why tonight? I have no idea…but there it is…your obnoxiously overdue update on the life of Riley Jane and her rambling mother. I will try to be better about writing, not just for myself but for those who’ve loved and supported us for so many years. Thank you again for everything.

I’ll leave you with something mind-blowing…

Riley is going to be 5 next week.

FIVE. Riley. FIVE. I know, I can’t believe it either. Go. Riley. Go.

Well Overdue Update…

I have been silent as conversation pertains to Riley…not because there isn’t anything to say but because it is so ever-changing that the moment I find space to write my thoughts they have already shifted. The prognosis has changed, the plan out the window. A couple weeks back her immune suppression had been tapered down to the point that exposing her to the outside germy world was an option…I had taken her to parks, the library and to visit friends…friends with children, germy children and she played with them. REALLY played with them, children her age. When I told her we were going to visit Elsie…a little girl who she was hospitalized with as a baby who was her very same age it took her a good while to comprehend that there was another four year old child on this planet other than herself. Like…seriously…she was genuinely confused. She enjoyed that day so much to the point that she realized the next what she had been missing all these months in isolation. A realization that led to some “real real” discussions with her…I had to come up with answers to things like “Mommy why don’t I have any friends?”, “Will I get to play her again or am I too sick?”, “Do other kids play like that all the time?”, “If she has the same thing as me why isn’t she sick like me?”. Those questions led me to lie wide awake at night staring into the dark oblivion questioning everything about how I navigate this journey. I had had these posts swirling in my head with stunning images to accompany my words that showed a glimpse into our newly found freedom but now with her all her questions those photos held a less joyous and more heavy meaning to me. I felt I owed it to you all to share, to her to get it right and to myself to get it out. Yet any words I had planned to sit side by side those images didn’t seem valid. Because here’s the thing…she’s not a baby anymore…I am not just documenting my experience and how I perceived it because I have her emotions and words to sway me.

With all of those doubts and questions came my silence. I chose to not make the time or have the gall for that matter to write the posts…why I’m not exactly sure…maybe because I was exhausted…maybe because I felt any interpretation or reality of the situation was fleeting. Nonetheless I stayed quiet. I savored the moments and remained present with the humans directly experiencing them with us.

Last Wednesday we had a follow up with her BMT team and her monthly IVIG infusion. The follow up went well…I didn’t have many new symptoms to report other than her continued weariness and lack of energy. We all felt comfortable moving forward with a plan of eliminating a couple of meds and tapering down on some of the remaining…we were going to continue progressing forward, continue trusting in her bodies response. Within the hour after getting home I got a call from the hospital. For those who know the drill…you KNOW getting a same day call post labs is not typically a sign of good fortune. I reluctantly answered the call and when I heard “Are you still driving?” KNEW the context that would follow would not be ideal. Nothing good ever comes after statements like “Are you still driving?”, “Are you sitting down?”, “Are you alone?”, “Is now a good time to talk?”. I braced myself as I’m so strategically trained to do and listened as the NP outlined for me that the changes we had discussed making were now…you guessed it… out of question. Riley’s labs had come back showing a flare of GVHD…the markers we follow so closely that led to her severe illness and organ failure in January were back…creeping up, rearing their ugly heads and dire plans.

All there is to do is something different. High dose steroids are the first line to halt progression…it worked last time…our hope is it will again. Along with those come a whole series of fun…if you’ve been following her journey you’ve heard my ramblings and descriptions about the side effects of steroids…I’ll spare you all the repetition and just say…it fucking sucks. If you’re offended by that statement then you have never experienced having a child on steroids so your opinion is completely moot and you may kindly piss off for any eye-rolling or gasping that ensued upon reading my words.

The follow up to those is ramping up her prophylaxis antibiotics and starting a new B-cell regulation medication that has been successful in treating lymphomas, leukemia’s and has shown promise in managing chronic GVHD. Note where I say “shown promise”…there is no “HEY this WILL work” medication to prescribe her…clearly if there was you wouldn’t have to be taking your time reading me ramble on because well…she’d be fine and my biggest parental complaint would be how much of a dick little Tommy is in our Trekaroo Outings (or whatever it is that healthy kid parents do). She is unknown. The success of this medication as it applies to her presentation is unknown. The majority of questions that I have are answered with “There is no right answer to that.” and that is NOT because she isn’t receiving quality care. She is in the hands of the best of the best and I KNOW that with my entire being…she is simply a mystery…an adorable little mystery we all long to solve.

The following weeks will be telling…telling as to where we go from here…it may be up…it may be down…wherever we go I’ll be by her side…waiting for her queues, listening to her team, answering her questions and convincing myself that whatever comes I can handle because…well…my patient is my teacher. She’s got this and so do I.

You’ve done it before…more times than I care to count…Read. Share. Send Love.

I lay in bed this morning listening to Riley playing with her princess dolls beside me…she is always playing with those dolls. She narrates an entire little world filled with weddings and galas and “banquids” (she means banquet but her mispronunciation is too adorable to correct.) I should feel relief, I should feel overjoyed. I should feel everything except what I do. I feel frozen. I’m afraid to move because she’ll know I’m awake and want me to play along. I should. I should be able to. I should want to. I can’t…she can’t know I’m awake…the carefree language of pretend she is speaking I simply cannot fake my way through.

She’s home. She’s okay. She’s happy.
I’m a million miles away. I’m suffocating. I’m terrified.

What the actual fuck? My mind starts attempting to calm me down while shitting on each thought before it’s completed. I have everything I wanted. (for now – but what if?…) Everything is okay. (is IT?! – but what if?…) She’s home. (yeah…today – but what if?…) GAHHH. I’m glued to the bed by what-ifs. I want to be asleep, I want to just sleep through this part. This part I haven’t mastered. The come down. The “back to normal”. I can’t sleep…I went to bed at 8…I was already feeling my body being taken over. I thought I could escape it with sleep. What a nice sentiment. That would have had to involve actually sleeping…instead I shot awake gasping for air every hour or so. I’m so tired but unable to rest, 10 hours of terrorized slumber and just like that it’s the next day.

My body feels like the vessel of a snow globe…if I lay here still enough maybe these feelings will all just settle. But I’m vibrating…I’m trembling with anxiety and fear and gratitude and exhaustion. I can see every flake of twisted emotion shaking within the hard shell that is my globe. But if I get up it will be everywhere. The tiny flecks of discomfort will fly up…they won’t just remain in the pit of my stomach where they reside now and I know that. They will twist and turn disrupting everything. With every step they’ll shift, with every request to play they’ll scatter, with every inhale I’ll pull them to my center and then upon exhale they’ll blast out with renewed force.

I couldn’t even put my feet on the floor until I had given myself permission to leave. I knew that I couldn’t be in the house, I couldn’t pass an ounce of my messy energy onto the girls. I put on shoes and just headed out to walk. I wore spandex thinking I might decide to spin or bend my way out of this. I took a book thinking I could catapult my mind into a different world for a bit. I took a credit card thinking at some point some sort of sustenance may help. I decided not to take an allergy pill thinking that if I was lucky the discomfort of itchy eyes and a stopped up nose would take my mind off of the anxiety radiating through my body. Twisted, right? I know. I had no plan. Nothing. I walked aimlessly for hours…I thought about getting brunch but didn’t actually want food so “brunch” would’ve meant a Bloody Mary but I’m pretty sure if you’re alone in spandex occupying a table not eating and ordering vodka it’s not called brunch…it’s called drinking alone. Which let me clarify I have ZERO problem with…in all reality I wish it would’ve sounded good…it just didn’t. I ended up with an ice coffee at one point and a smoothie at another. I followed that with going home to cleaning and laundry and then I packed a bag for the hospital. No we are not going back. But since all the “ugh I wish I had’s…” are fresh in my mind I thought it might be comforting to just pack it up and then put it away in the closet. I’ve now got the essentials for an unexpected-hospital-overnight stowed away. If you’re prepared for disaster they’re less likely to come right?

And then there’s Riley…she’s spent her day as though she’s never endured a moment of trauma ever…ever. She’s been out back taking advantage of the 80 degree weather sprinting in an out of the sprinklers and a blow up pool with her sister. I couldn’t even watch. They were giggling and singing and shouting and squealing with delight …all of the happiest sounds you could imagine. I couldn’t bare to listen. I actually had to leave again. I took myself somewhere where I could be alone to write this…to write about how tortured I feel because that feels better than watching my daughter happily splash. God, that’s twisted. How is that possible? How is any of this possible? How can I be so present and capable during the worst moments and completely frozen during the best? I know it’s fleeting. I know I’ll recover but I hadn’t even gotten my footing from the last go round and this just has completely knocked me back to I don’t even know…what comes before square 1? Zero. Right. I’m at zero.

When I try to pin point why I’m such a damn mess…I’ve got nothing…I mean it was 3 days and in compared to last time it’s just laughable how FINE she really was. I mean she was fine so quickly because we knew what to do this time but STILL. It all just happened so fast. So unexpectedly. So randomly. She had an MRI last week and the results were good. She had IVIG Monday and did great…she even got a princess dress, it was a damn good day. She had a follow up BMT appointment Tuesday and it was the first one since admission that we just kind of sat and talked about how great she was doing…there was nothing to report. Wednesday I worked, she played, we went to bed and then I woke up with the overwhelming urge to touch her. You know what transpired after that…well no I guess you really don’t, but you have the cliff notes…fever, ER, ambulance, UCSF. On top of the “emergency mode come down” I honestly can’t say I know how to process the “move-forward” on this one. She was just in so much danger and then very quickly not (thanks steroids). It wasn’t a slow build up of symptoms, there were no signs, I wasn’t on higher alert. I just happened to wake up and have a gut feeling. What if next time I don’t? What if next time I’m not there? What if I never stop spinning and asking “what if”? And then there’s her…there’s Riley bounding from chaos to calm with no hesitation…she’s not asking “what if?”…she’s enjoying what is. All I know is this…when I grow up I want to be like Riley…and if she grows up she’s going to run the world.

Happy Saturday…

Hey guess what…we have no idea what triggered any of this. Shocker, right? I know. How very unique of a situation for Miss Riley to be in (insert eyeroll emoji here). So far every culture has come back clear, every viral panel negative…her vitals have remained stable and fevers at bay since we bombed her little body with steroids. Her chest X-Rays show some “haziness” in her lungs…maybe pneumonia which shes been getting prophylactic treatment for but for added kicks we started a full course. Maybe some random unknown virus she picked up despite our precautions? Maybe just more manifestation of GVHD? Who knows. If it’s the latter that’s more of a chronic issue and so will show itself more over time…it’s already been in the plan to do a follow up CT scan in the coming months to peek in on her lung progression so that plan remains.

She isn’t eating or drinking a ton but has been on round the clock fluids so hopefully once those are stopped her appetite and thirst will return. She slept the majority of the day yesterday…maybe she needed the rest or maybe much like a long flight she knows time just passes quicker if you sleep through a good portion of the hours. Either way she is stable enough that whatever this is we can continue working through at home. We of course want to minimize her exposure to anything else so the less time in these halls the better. We’ll be headed home today with some adjustments to meds, another heavy dose of perspective, heaps of caution and a few more gray hairs.

Maybe this admission needed to happen to show us that it’s possible for her to get sick but not THAT sick…and of course by THAT sick I’m not trying to belittle her past couple of days just tout the fact that she’s still walking and life support didn’t get involved. Tiny victories, right? She’s come a very long way in a very short time…we still don’t know where the hell we are going but are headed up, down and all around together.  When we were last discharged  it was without all the answers but I have even more confidence now in the valuable knowledge we gained. I feel less vulnerable about the unknown and more confident in the bits that we do know.  We’ll be walking out of here today with no answers but Riley in tow and that is all that matters. That 6 week roller coaster provided us with  precious insight to this complicated little person that kept us steps ahead this go around. We’ve learned to be stupidly cautious, to trust our instincts more than ever and to never underestimate the quickness in which her little body can turn on itself. There are few things more rewarding than getting to apply those “lesson learned” tactics which were once hindsight to a current situation and watch it unfold in success. If this was Riley’s way of testing her parents, her UCSF team and her overall support system…we passed. She passed.

Clearly the next few days will be very telling…she could take a turn that ends us right back up here or she could just get back to skipping through the house as if none of it was real. Stay tuned and once again…all that love y’all send is more appreciated than anyone will ever know. xoxo

Go Riley Go.