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.
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.
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
To make a donation visit: http://www.gofundme.com/3x0iig
Any questions feel free to email me at email@example.com
You can also follow Life of Riley on facebook https://www.facebook.com/rileyjanebrown