Tuesday, August 30, 2011

Messy Thoughts on Tuesday Night

Perhaps I'm feeling reflective tonight because I had my weekly therapy session with Dr. Mark. He's been one of the best choices Neil and I have made. This is just not normal stuff to deal with and he's been helping us get through it.

Earlier this week I received an email from one of the wonderful case workers at Will's doctor's office with the updated Mito Leigh's family list. From what we can tell, we're one of two families who live near Houston with Leigh's - at least we're the families who have agreed to share our contact info. The other three or four families are in far flung parts of Texas and even into Louisiana.

The email also indicated that this week there is another family who is being told their child has Leigh's. It made me relive everything all over again. There are some moments forever burned into my eyes. My heart is so heavy for this family with the new diagnosis. We don't even know them and may never know them. That first week... the first month... it's just still so fresh.

Part of why I started this blog was to spread awareness that this Mitochondrial "thing" SUCKS and finding a cure is the only option to help others in the future. In my view, Mito is worse than cancer. (if you've had cancer, or know someone who has died from cancer, I'm so very sorry if this offends you) This is easy for me to say because I don't have cancer and haven't lost anyone from it. It just makes me mad. At least SOME cancer patients have the hope of chemo, radiation etc. All we get is some mystery drug at Stanford and some supplements, and I'm sitting here feeling having a little "find me a dang cure pity party" right now.

So we leave for Stanford on Sunday. Like my fellow mito family friend told me in an email after they finished up the Stanford trial last week with their daughter, "As a parent I wanted her to wake up one morning and be cured but that is not going to happen." They were approved to continue using the drug, so that's a positive.

So, Dr. Mark and I talked some about expectations from Stanford. It's going to be hard not to feel discouraged or disillusioned by not seeing a major result. Don't get me wrong, I think we will see results. I just I need to manage my expectations. He's not going to magically be cured, but when all you have is this drug to hope for, it's hard to digest. It's all about improving quality of life and keeping him as healthy as we can. That's just not as impactful as some of the reports you read about the EPI-743 drug. For example, girl is blind, girl takes drug, girl sees 20/20 vision. That's a HUGE change. The flip side of course, how lucky are we that Will isn't blind. I should be glad there's not some big huge change we need and want, because life is (theoretically) pretty good right now.

Sorry for the rambling post... humor me. It's only Tuesday and Will has some yellow snot. Say a prayer that it's just allergies. :-)
My baby boy - only a few hours old and already giving me attitude. :-)

2 comments:

  1. just can't imagine...but love y'all. praying

    ReplyDelete
  2. He is a blessing...praying everyday!

    ReplyDelete