Monday was the 9th…just another day but the 9th is a marker for us, we arrived here to UCSF August 9th and Riley recieved her transplant October 9th. Quick math, yup…4 months in the hospital, 2 months post transplant. Jeez. It is amazing how time can stand still while flying by. So much of me is stuck back in August but the snowflake decals kindly placed on our door by hospital staff remind me that the seasons indeed have changed. Twice actually. Fall happened. Winters happening. The seasons don’t wait…the outside world doesn’t stand still but we do. I look at Riley…she will be 5 months old on Sunday and we don’t get those months back. I’ve said from the beginning that the minute we walk out these doors she should revert back to a 3 week old baby, she has overcome so much and worked so hard she really should get all the time back. A do over ya know, a chance to just be a baby…a healthy one. I want to see her grab again for the first time but it be her sisters curls instead of her broviac cords. I want to be able to ease her into tummy time again but this time on carpet not this cage we call a crib. It’s only fair, right? Fair…huh. That’s an interesting concept, I don’t even know what that means anymore. Last week the opthamologist came to check Riley’s eyes for CMV, it’s a routine thing for us that involves her eyes getting dialated (not fun) and a really fancy set of headgear worn by doc that she’s pretty fascinated by. It was a different doctor this time, one we’d never met…he asked how old she was…”almost 5 months” his response…”Congratulations.” Whoa…that’s not something I’ve heard very much. I mean that is the go-to salutation for a women with a baby but ”I’m so sorry” has been the more common theme. It hits me every once in a while in those moments…oh yeah I had a baby. But just 3 weeks into life that baby quickly became a patient and “congratulations” was no longer peoples “go-to”. I am sure that will not be the last time that I get a reality bubble burst in my face, sometimes I think they are necessary though to remind me that this little “Life of Riley” many of you have followed and fell in love with is also just my baby.
So…about that baby…well…the results of her T-cell function test came back yesterday. Still no improvement. I mean…I wasn’t surprised, I wanted to be but I wasn’t…I knew the function wasn’t there, I can’t explain why-Mom sense strikes again. Discharge discussions once again pulled off the table. And. We. Wait. While nothing can speed it up there is a whole lot that can slow it down so the goal is to avoid all or as much of that as possible. Her CMV did come back undetected for a second week in a row and so the Ganciclovir has been pulled back to once a day. In the coming weeks we want CMV to remain undetected, Rhinovirus to kick rocks, T-cell function to kick into gear and Graft vs. Host disease to skip us here in room 722. It is not ideal but we can wait…we’ve made it this far and as much as the end is trying to escape us we will catch up. For now we have a bit more time to prep the house, work on fundraising efforts to ease our ever-expanding costs (any ideas wanted, welcomed, appreciated) and continue being thankful for every single day that Riley is flashing that gummy grin. Positive thoughts, prayers, good vibes, rain dances, juju, holiday magic and all that other jazz…keep it coming. Thank you all…so so much. xoxo
For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com
Thank you, thank you, thank you
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