Thursday, September 1, 2011

A Few Little Updates

How appropriate! Instead of Live, Laugh, Love
it's Live, Learn, Love! 
Well, I'm finally back to work as of Tuesday and it's been great being back. The kids don't start until next Tuesday, the 6th, so the past few days have just been with the staff getting things together. I am very happy to say that I will be working in Kindergarten again this year, half in the resource program and half in the special education program. This is kind of something new for me, so I'm definitely looking forward to it. I am going to be working with some wonderful people (staff) so I'm very excited about that, too. I've attended several workshops/seminars over the past few days that have gotten my 'educator brain' going again and it feels so great, I love it! I'm just looking forward to the kids starting and getting into the full swing of things again. Oh, and I'll definitely be keeping track of some awesome 'kinder quotes' again this year and posting them on here for your entertainment! :-)

As far as my clinical trial debate goes (see previous post), I finally emailed back Spring (the person in charge of the study) today. After talking to several people about my dilemma and getting lots of advice from people, I've decided that I really want to participate in the study, but I really don't want to take eight days off of work. It's not good for the kids, for the classroom teacher, or for me if I'm trying to get a job working in that school district. Someone suggested seeing if I could put off the study until next summer so that I wouldn't have to take any days off work - genius! So when I emailed Spring today, I asked if we could start the study in spring (haha), preferably around May. This way I'm not waiting an extra month til June when school is officially out, but by that time of the school year everyone's usually a little burnt out, so a day or two off before the end of the year isn't always a bad thing. I'm hoping that it's not too long of a wait to start because like I said, I really want to help out the CF community by doing this trial. I will update on here as soon as I hear something from Spring, so keep your fingers crossed that they are awesome enough to wait for me!

Finally, I forgot to mention this last week when I posted about my recent doctor's appointment. I asked my doctor about my gene mutations because I wanted to make sure I had the correct information; turns out I was thinking I had one mutation when I had a completely different one. So you're thinking, so what? Well, it actually makes a huge difference! 
To give a quick little background, to have CF you have to get a mutated CFTR gene from each parent (basically) to have CF. Some of those mutated CFTR genes have been identified and they're starting to do research to see if your gene mutation means that maybe you'll have a milder form of CF, or a more severe form, or more lung issues, or more digestive issues, etc. 
I found out last week that I have one of the less common mutations in the CF world when I was thinking that I had the most common one. So this makes a difference because of this post: One Step Closer! They are doing clinical trials for a drug called VX-770, but it is only for patients with the G551D mutation--which I have!!! I, for who knows what reason, was under the impression that I had a completely different mutation and that this drug wasn't for me at all....turns out I was completely wrong. I learned from the doctor last week that I was tested when I was about 3 for my two mutations (one from each parent) and they could only identify one - G551D. Then, when I transferred to the adult clinic when I was 18, my doctor tested me again, because they had made so much progress with CF reseatch, to see if they could identify my other mutation but they still couldn't. I was given this information after my doctor got the results five years ago, but I must not have written it down or something but I'm so glad I asked again. Of course, I didn't realize all of this until I got home from the doctors appointment, so I don't know what my doctor knows about the drug, but I'll definitely be asking the next time I go (in December)--kind of exciting for me to find all of this out. So, I'll definitely be keeping a closer eye on the progress of the VX-770 since I know that it's something that could work for me if/when it becomes available to CF patients!

1 comment:

  1. What a dream come true! I would love to have a G551D mutation, but I am stuck with DD508. VX-770 should be out very soon and I have only heard amazing things about it! Gives you a little more motivation knowing an amazing drug is right around the corner. I am crossing my fingers that VX-809 in combination with VX-770 will work for D508...only time will tell.