We're In!

Tyler and I just got back from Birmingham and he made into the trial!  We couldn't be more excited!  We actually found out some more interesting details (some that are revisions to what we previously thought):

First of all, this is a worldwide trial. So Tyler is one of 50 throughout the entire world in this particular cohort. Crazy!

Secondly, Tyler actually made it into Cohort One which, was definitely surprising since we had first thought he would be in Cohort Three, then we were told there was an opening in Cohort Two. But the researcher cleared up the details for us when we got there.  Apparently, since the trial is worldwide, some of the current events had delayed its' start.  As a result, Cohort One did not start on time and a few people were unable to be apart of it (which is where Tyler's spot comes in).  So He made it into the first group and the second group is, in fact, full but it has just been delayed until after the completion of Tyler's group. Again, we are pretty excited!!

We also learned more details about what the medications themselves.  This may be completely unscientific, but here is how I understand it...  Tyler will be put on two medicines.  The first one, known as VX-809, will draw Tyler's CF gene, known as Delta f508, to the surface of the cell.  Then he will take a second pill, VX-770 which will begin to help the cell work properly.  The research article I posted a few days ago shows the results of how just the VX-770 pill worked in patients with the CF gene G551D and since their gene is already located on the surface of the cell they didn't have to take the VX-809.  But they had a drastic improvement in lung function.  So we hope the combination of the two will have the same impact on Tyler's gene!

Thanks again for your prayers!  We have a busy month ahead of us and I am sure by the end of it Tyler will be tired of my serenades on the long drives! Luckily for him, a friend is going with his this week since I need to be at work. This should give his ears time to recover :) 

So Faithful

"How great is the love the Father has lavished on us, the we should be called children of God!
And that is what we are!"

1 John 3:1a

When I met Tyler, it didn't take me long to figure out how much I loved this guy.  And now, almost six years later, I am so happy to be his wife and I honestly couldn't imagine my life any different. Which is why when the phone rang the other day, I could't have been more thrilled!

A few months ago, I had found out about a breakthrough clinical research study for Cystic Fibrosis patients and called Tyler's doctor and our local CF Foundation to see what the buzz was all about.  After hearing the exciting reports, Tyler and I began to plan and pray that the Lord would open up doors for him to be a part of the trial.

At first, we found out that our local hospital was not involved and since the trial requires weekly trips to the research facility at the hospital, it seemed like it might not be practical for him to be a part of it. But we felt so pulled to be a part of that we continued to see what "close" hospitals were involved. After a few phone calls, I found out that the University of Alabama Hospital was offering the trial and we immediately made an appointment. At our appointment, we were told that Cohort One  (or group one) of the trial had already started and that Cohort Two was full. However, they planned to open up the last and final Cohort Three in several months and that at that time Tyler could be considered to fill one of only 50 spots.  And so the wait began!

As we left our appointment, the research team said that we could call back in a few weeks and check in on the status of the phases so we could better prepare ourselves for how long the wait would be. And if you know me.... I need a schedule! So as soon as I felt like it was socially acceptable to begin pestering them....we did. (Luckily the staff there is amazing!) When we called, they notified us that they were just starting Cohort Two and so it would be several months before they even opened Cohort Three.  But that was okay, because they reassured us that Tyler was still a strong candidate!  In this moment, I pulled out my calendar (an obvious safety net) and began to mark the day when I felt like it would be appropriate to make another inquiring phone call. But I love God... He knows I'm a planner and so it wasn't but two days later that Tyler's phone rang....and it was someone from the research team.  One of the CF patients had dropped out of the trial and there was one spot available in Phase Two.  And they offered it to him!

So Tyler and I head to Birmingham this week so that he can be screened, which is the last step in the consideration process. If he meets all the requirements for the trial, he will be in and we will start our weekly drives to Birmingham for about 5-6 weeks. It has been awesome for me to see how God has worked out each part of the process. And while Tyler can't understand my knack for being so Type-A (control issues anyone?), I am reminded that the love God has for Tyler is so great and while I may not be able to piece every part of this together, I serve a God who "causes all things to work together for good to those who love [Him], to those who are called according to His purpose." So I guess that is reason enough to give up a little control!

 If you think about us over the next several weeks, we covet your prayers!!  My most selfish prayer is for him to get the actual pill and not the sugar pill (but we won't know....so I am definitely going to have to let God take care of this one!)

P.S. In case you were wondering about the trial.... the results of a similar trial (for CF patients with a different gene mutations) were released and we are excited about them so far! Tyler's trial will be just a little different but check them out the details for yourself here:

http://www.cff.org/aboutCFFoundation/NewsEvents/2011NewsArchive/2-23-Phase-3-Study-VX-770-Shows-Positive-Results.cfm. 

Isn't it Ironic?

Living in an apartment has definitely been interesting!  Not that I am complaining, considering Tyler and I lived in about a 300 square foot house prior to moving into our two bedroom "mansion" apartment, its just that others continue to tell me that the biggest perk of living in an apartment is the worry free maintenance.  Well that sure hasn't been a luxury around here and when our most recent adventure occurred, I couldn't help but share....

So our dish washer has been leaking and even though we didn't have one of these things in our last place, I think I can put two and two together to know that water all over the kitchen floor is not the norm (although it has made mopping the floor much easier!).  Nevertheless, the lady at our apartment complex found it necessary to walk me through the steps of how to run a dish washer, turns out my original thoughts of put soap in, lock door, and turn dial to on, were all necessary steps in the process.  Anyways, after she ruled out the idea that I may not be the cause of leak, she decided to send out a "technician". The first visit of our handy "technician" ended in him saying that their was not significant evidence of a leak and that the cause was unfound.  Nice...so I let it continue leak for awhile... not wanting to deal with the issue or take another lesson in how to turn on your dishwasher. I was afraid a user manual might be involved the second time around.  But eventually the flood waters became too much and I called once again to report the incident.  This time around, the "technician" left a polite note on our door reading: "Please call the front office and tell them where the leak is coming from and what you think is causing it. I could not find a leak."  Frustrated, I unlocked my door and headed into the kitchen only to find the result of a "non-leaking" dishwasher.  Apparently the water covering my kitchen floor was still confusing to the technician? Oh ironies!

But all this happens for a reason! And I am glad I have a husband who can make me laugh through all the silliness. (Plus, it has pushed us to look for a house but more to come on some of our findings next time!)

Tax Season & New Projects

Well it's tax season around here which means my hubby is most likely working. Which means my best friend won't be around to hang out with, which naturally means I need a new project!  I begged for dog.... which didn't really fly since we live in an apartment. I suggested a baby...just kidding! Seriously, such a joke... and so blogging it is! I guess this will give me the opportunity to keep friends and family up to date with what is going on around here.  Mostly I will update you on life, the search for our first home (fingers crossed!) and our new, old, and everyday journeys with Tyler's Cystic Fibrosis-- all of these when I find time to break away from it all and take a breath to share.

But the dog is so cute! So I am still pulling for this to be a project too!