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.

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