“Riley’s immunity is at a level which we consider fully reconstituted”
“Normal is 84% and she is at 80%…so she’s…normal”
That was not at all the report Chris and I were expecting at clinic on Friday but it’s the one we got. And they’re sure…no misreading…no “just kidding” to follow. Happy tears? Let em’ flow. Ok, ok let’s step down the enthusiasm a bit though, just for a second…as with all things SCID there is ususally a “but…” Dr. Horn did go on to voice some concerns about a bit of rash Riley has as possible signs of Graft vs Host Disease. Because of these observations they’re holding off on the removal of isolation precautions. Should GVHD be developing she would be started on a series of meds that would wipe her immunity back out so we’re going to hold off on too many of the fireworks for now.
But here’s the thing, regardless of her results…I don’t think I’ll ever feel as though Riley is normal. She’s not. She’s Riley. She’s so much stronger than normal. Too unique for such a generalization. Her insides are so incredibly complex that I don’t feel “normal” will ever be an appropriate classification but it sure beats some of the categories she’s found herself in before. Riley’s spirit, her soul if you will has never faltered. Her immunity, her counts, her levels-they’ve had their moments of nonexistence and dire straights but it’s almost always felt like two separate entities. She’s handled the crap shoot beginnings she was dealt with such grace. Everytime things have gotten grim she’s seemed to smile a little brighter, emitting just enough light to let us know she could see the other side. Sometimes I look at her and a rush of worry comes over me, like all of a sudden I’m consumed with the “what-ifs” and “what could’ve beens.” It’s in those moments that I swear she reads my expression and like the true smart ass I’m sure she’ll grow up to be she shoots me an “I got this” grin.
There will never be a time when Riley is 100% in the clear, remember…she’s just not that simple. Graft vs host will forever be that scary thought that lays dormant in the back of our minds until the slightest rash or bout of vomit occurs. That thought will then flood us, emails will be sent, appointments made and hopefully our outcome will repeatedly be “nope, no GVH, just good ol fashion baby stuff”. Should another battle be apart of her journey we’re up for it but have no plans to encourage one. Turns out we’re really enjoying this whole home life thing. I’m not particularly worried about GVHD…my job is not to worry, it is to observe and then take action if necessary. The days have too much potential to spend them agonizing over possibilities I can’t change. She’s a fighter, the team at UCSF has proven themselves and we as parents have gained an immunity towards plot twists. As far as today is concerned we are in a great place. Her counts, function and health are at levels we never dreamed of and we couldn’t be more grateful.
For those who have followed Riley from the beginning or even just hopped on board for the last few months of the ride thank you so very much. The constant stream of positivity and support has been more beneficial than anyone will ever know. Please continue sending love our way…while the hospital portion and hopefully the scariest of our days are behind us we are nowhere near the end.
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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