Tuesday, July 26, 2016

what it wants.

MRI was supposed to be today. Because of a water leak that somehow spread to the MRI bays, we were moved to tomorrow morning at 7:30am. ::yawn:: I was up early on Monday because we had to go in first thing for the test that decided whether Reese could stay off of daily cortisol.

She has taken cortisol since she entered the hospital in 2012. So, 3x a day, I would give her the dose to avoid a potential adrenal crisis. For MRIs or surgeries, they'd stress dose her, but then slowly things changed. We never upped her dose, no matter her weight/growth, we stopped stress dosing for MRIs, and I went ahead and fought for her to be weaned. It was an emotional process, really. I cried wondering if I was doing the right thing, didn't know if I should go to another endocrine office for a second opinion, I searched the internet for other kids that might have weaned after being on a replacement dose for so long. Finally, her endo agreed to taper. We weaned from January to June... slowly... and then we stopped. I almost tried to go back, at the end of the school year, thinking "maybe she is more tired. maybe I made a mistake." but I pressed on and things totally were fine and, yet again, Reese proved that her body does what it wants to.

This is the second time that endocrine has said "well, that doesn't really happen" and it did. She is fully weaned of cortisol. Reminiscent of when we stopped with the ddavp for the DI, back in the day (over 3 years off of that now), I was amazed at what our bodies, what Reese, can do. So now she only takes her daily synthroid, and really, we will see if she even needs that soon. Surreal, really.

We are heading into month 20 on vinblastine - a protocol that was supposed to be a year, but has held us stable for so long throughout. MRIs are different now. I do not have the same sick feelings that I did before. Instead of fearing that we wouldn't get shrinkage, I simply am curious as to how "stable" we are. Her MRIs read, in more scientific terms, "a little less here, a little more there, overall stable". and it is almost as if a weight was lifted off. I can't really explain it, but only to say that as time goes on, I realize that it will do what it wants and we will adjust the course as needed, with many plans ahead of us. I don't mean to say I have become unemotional to the process, because I certainly have not. I still get sweaty palms the second they walk into the room to tell me about the results, but the pre-MRI vomiting has subsided. Not being able to eat for days before is behind me most of the time. I hope people read this as hopeful, I guess. You don't become jaded, but just simply understand that you are not in control of what is going to happen. You are simply informed of what has happened and then can adjust your course.

This summer has been really amazing and has flown by. I can't believe that next week will be August and soon I will have a 4th, 3rd, and 1st grader. This time last year, I would cry at the thought of Reese in school all day, but now she is counting down to her new class, to see her friends... the other day she carried around a picture from her christmas party last year and showed anyone who would listen "these are my friends" and would name them all. We have been to the pool countless times, we play out in the sprinklers and slip n slide, we go to dance, we get ice cream just because it's hot... It's perfect. Each girl has their place in the day, their chores, the things they help each other with regularly, the sister pairs that play certain games with each other while other sisters run off to do something else.

Each day seems to crawl by, but quickly, a new week begins and I am left with the memories that we've made. Summer 2016 is a win.


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