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.
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!