Crushed

I try so hard to remain positive about most things in my life, but sometimes things happen that just knock me down and steal my optimism and hope.

We have been trying for over a year to get Grayson on a drug called Epi 743. The drug is still in clinical trials, and until last week, the trial for Leigh’s patients has only been open to kids with a confirmed genetic diagnosis, which Grayson does not have. Last week, we found out that they would be accepting patients with a clinical diagnosis. I immediately contacted the site in Houston and was told they would be in touch, as they already had all of Grayson’s medical records. I received an email on Friday that Grayson has not been accepted. Apparently there are some questions on his MRI (I don’t know what that means exactly) and once they have resolved those questions with radiology, he will be put on a waiting list.

I’m crushed. I really, really believed this was going to be it, that Grayson would finally have access to this drug that has the potential to improve his quality of life and even extend his life. It just makes me crazy that there’s a drug here, in my own city, that could make such a difference for our little boy, and yet, once again, he’s been denied. Denied without a real explanation. I’m trying to remain hopeful, but it’s hard.

Then tonight several friends posted this video about a little girl with Leigh’s who isn’t going to be able to get the drug in another clinical trial (that we also applied for) because of the government shutdown. Yes, there are children’s lives at stake because the government can’t get it together. Rage.

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I had a hard day yesterday. I was down because of the email on Friday, and then spent all Saturday morning trying to find a park near our new house that has swings that Grayson can use. There are none, and that just made me even more down. After very long day and much protest at bedtime, I finally got both kids asleep and decided to catch up on some TV. I needed something light and funny, so I chose Big Bang Theory (one of my faves).

A few minutes into the episode there was a scene where two of the female characters are discussing something they are working on and start making jokes about sick and dying people with brain lesions. Which, ha ha, is so funny, unless…oh wait! unless you have a kid who is sick and dying with brain lesions (and who can’t get access to a drug to help him- aaaa!). So much for distracting, mindless TV. And then I remembered another blogger I read writing about how another CBS show was making fun of someone with albinism- and her little boy has albinism. So, I say- shame on you, CBS, shame on you.

Unfortunately, there is lots of negativity and disappointment swirling around in my head right now, and I’m not sure how to get out of this funk. Hopefully a busy, scheduled week and cooler weather will help lift my mood a little!

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8 thoughts on “Crushed

  1. Oh Elizabeth. I'm so sorry. That is horrible, horrible, horrible. Grayson (and every other child) deserves every chance they can get and the fact that children are denied that chance is just awful. I don't even know what to say. My heart goes out to you and I really hope he's moved from the waiting list into the trail super quickly.

    Abiding with you.

  2. I'm sorry.

    I don't have better words to say than that, which is really kind of lame. Sometimes things just suck and no words can take that away.

    I hope this week brings brighter things your way.

  3. Oh sweetie. I'm so sorry. What an awful weekend! I'm so sorry that they didn't accept him into the trial and didn't even explain why… that's so frustrating! Hopefully it will happen soon. And the shutdown… oy, don't even get me started, makes me insane with frustration. I hope you have a much better week and pray that things start falling into place.

  4. Oh E, I'm so sorry you've been facing so much frustration and disappointment lately. It's got to be even harder when it's surrounding the health of your child. 😦 I'm so sorry…

  5. I am so sorry about this. How devastating to know that there could be something great for your child, but that you can't try it. I am going to hold out hope that you get on eventually.

    Hugs to you all.

  6. I wish we could all come together and throw a gigantic fit on Grayson's behalf in order to get him that drug. I can't even imagine how disappointing that is as his mom. Hopefully that will still work itself out in the very near future. As for the government, they are a bunch of immature cry-babies and hearing that their silly fighting is interfering with sweet kids' health makes me angry!

  7. So so so sorry. So sorry. My heart is sad that this happened and that people making the decisions don't see the people behind the files and scans. Fingers crossed that the new information they need sways their decision (and the govt can get its act together and people can get the trials they need, oy!) xoxo-

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