515 days (give or take, so sue me, I suck at math, blame FX) have passed since I posted about how excited we were after just one day on Stx-209. Then, we weren’t even sure what, if anything, Logan was getting but come January, when we began titrating down off the “study” drug, it became quickly evident that he was getting something.
“Titrating” , since May 15, that word has been used at least once a day in my house. I can’t give you the Websters definition, but in layman’s terms it is the process we are using to wean Logan off of Stx-209, for what we can only assume is for good.
Just 515 days ago, I was so full of hope. So much promise I had put into this little white pill. I thought it would change our world, it did. I thought it would open up my sons world to new possibilities, it did. Never did I think it would break my heart, but it did. Even up until May 14, I attributed most of Logan’s new-found successes to Stx-209. Anyone who knew me, could see how much Logan had grown on it. I spoke of it daily, I called the newspaper and bragged about it. It’s hard to say how much was truly just him growing up, or all of the measures we had put into place, or the pill but it was hard to deny something was different. My 10-year-old niece sat on the couch next to Logan one day, holding his hand, and says “He’s different now. He’s just different, he plays with me”. I knew then, I had made the right decision to allow him to participate in a drug study.
Wrong or not, I, like so many other families, had put so much hope, probably too much hope, in that little pill. Never in a million years, did we imagine getting a phone call that said, um, well, we ran out of money, so, no more for you. Thank you, and have a nice day.
I am angry, I am hurt, I am heartbroken not just for me but for all the families that are affected by this. I am hurt for my niece who has this new side of her cousin. I am hurt for his sister, who now plays with her brother. I am hurt for the kids in Logan’s class who are now his friends. I want to scream from the rooftops: it’s already not fair that Logan isn’t like other kids and struggles with so many simple things, to have what we thought, what we hoped, was something that would help make his future a little brighter taken away, just like that.
Just like I did after we got our initial diagnosis, I realized I couldn’t just sit by idly and just let it happen without a fight. Blame it on being born in Missouri, but I need the “why” and I need to fight back. I contact the press, use any connections I can find, to make a stink, tell our story. It may do some good, and it may not but at least I will have tried. At least by not going away quietly, a few more people are aware of Fragile X.
We started our titration (see 3 times here already!) yesterday, and I am scared yet ready to get it over with. Scared to death because I don’t know whats going to happen. Will the meltdowns, the REALLY bad ones, come back? Will we lose those oh so precious words we have gained over the last 500 days? Will his friends notice a different Logan when he goes back to school in the fall? Only the Almighty knows the answer so I have to trust in Him. Some people have asked, and I know other FX families are in the same boat, as to whether or not we will search for another study to participate in. I just don’t know. It’s a HUGE decision to subject your child, your flesh and blood, to be a guinea pig. Did I feel some guilt over it? Absolutely!! I am a huge believer in research and I believe that one day, we will have something that will help Logan and all of our other FX families, have the life they deserve. But, based on my experiences of my past, I have a difficult time putting my trust in someone who has wronged me before. Am I sorry for doing? Nope not at all.
So, I think for now, we will slowly wean off of the stx-209 and see how it goes. But I did have to laugh to myself when I got the mail today only to find a letter about a language study being done that is looking for participants. Our very first venture into the research field was in a language study. So yeah, it is sort of like a new beginning. One that I believe, I have to believe, will have a happier ending. This warrior mama will NOT let Fragile X win this war!