Dreaming of a Cure and Getting Closer Everday!

For all of you who are making our dreams possible, thank you just isn't enough!  We love and appreciate you more than you know and we are daily thankful for your commitment to finding a CURE! If you want to join us at Great Strides 2012, check out our

running website!



Captain's of Industry

I hope my husband always knows that I am and always will be his biggest fan. I am just so proud of him! This year he was asked to speak at the annual Cystic Fibrosis Foundation's Captain's of Industry dinner. It was the perfect opportunity for Tyler to express our deep gratitude for all of those who give so generously to help find a cure. It was wonderful to be able to put a face with many of those donors who we will forever feel grateful for.

Tyler was, of course, such a natural on stage and we had a great time at the event. I tried to refrain from taking too many pictures.... but I had to take a few!

Tyler's mom came with us :)

Thanks to everyone who continues to fight for a cure! We are closer everyday and we couldn't say that without you!

We're Making Progress!!

This is a huge step in finding a cure for Cystic Fibrosis! Vertex submitted its drug known as VX-770 today for FDA approval. They asked the FDA for priority review, so if granted, this drug could be approved within 6-10 months! This is such good news!  While this is only one of the drugs Tyler needs for his genetic make-up, it is definitely progress!!

http://www.cff.org/aboutCFFoundation/NewsEvents/Vertex-Submits-VX-770-Application-to-FDA.cfm

They start the second part of the Phase 2 trial on Vertex's VX-809 drug this month. VX- 809 is the other drug Tyler was on during his trial (he needs the combination of the VX-770 and VX-809).  Vertex is also beginning research on a new drug, Vertex 661, which is only for people with two Delta F 508s. This drug could be even more promising for Tyler!

For all of those who give to the Cystic Fibrosis Foundation, you're making a difference! 

Simple Savings

It's a little known joke around the Blount household that I would make an awesome stay at home.... wife.  It is definitely a joke and I won't be leaving my job anytime soon!  But because of this joke, and well, for other obvious reasons, I love to save any dime I can and use it as "supportive evidence" for why I should stay at home :)

Anyways, since Tyler had to work late the other night (tax extension's are due soon!) I had the chance to do some research I had been wanting to do.  For those of you who are learning about CF as you read my blog then you may not know that people with CF have to have A LOT of medicines. Because of this, many people with CF are a part of government programs that help with the hefty costs of these absolutely mandatory medicines.  Like all government programs, to receive this type of help, you must meet certain eligibility requirements.  If you don't meet these requirements, there are other options out there that might be of help! We just learned about these options and definitely wanted to share just in case anyone else out there had no clue about these programs (as was the case for us!).

Tyler has to take these three medicines which can be rather costly: Pulmozyme, TOBI, and Cayston.  Turns out, that each of these medicines have a co-pay program where the manufacturer helps pay for a portion of your co-pay costs, if your co-pay is above a a certain amount and if you are not on government funded insurance or assistance.  Here are the websites I found that helped me through the process:

Pulmozyme 
Website: 
http://www.pulmozyme.com/insurance/copay-card.jsp

Phone Number: 1-877-794-8723

New Co-payment: ONLY $30.00

TOBI 

Website: 

http://www.tobitime.com/info/co-pay-card-tobi.jsp

Phone Number: 1-877-999-TOBI

New Co-payment: ONLY $10.00

Cayston

Website: https://www.cayston.com/assets/media/pdfs/Patient_Reimbursement__CC4389_ENG_10_27_10.pdf

Phone Number: 1-877-7CAYSTON

New Co-payment: ONLY $25.00

All I did was call the numbers I have listed and ask for more information about their co-pay programs.  Each person I spoke with was very helpful!  The Pulmozyme representative gave me all of my card information over the phone and said he would mail the card to me immediately. But in order to start using it today all I had to do was go to our pharmacy give them the information (ID Number, BIN Number, etc.) and they put it in the system for next time we pick up Pulmozyme.  The TOBI representative did almost all of the work for me.  She faxed a copy of the card over to the pharmacy and so when I arrived there today to take care of the Pulmozyme, the TOBI information was already up to date and ready to use.  Then the pharmacist gave me the faxed copy of the card.  Cayston has an additional approval process, they contact your insurance to make sure that you are not receiving any government funding, but after we hear back from them I am sure the process will be much the same as the other two.

If you have any questions, I would be glad to help! Happy Savings!

We're Breathing Easy!

It has been a LONG three weeks!  Much more so for Tyler than for me, but we made it!  We headed back to Birmingham last night (our third trip in about 8 weeks) to be there for our 8:00 a.m. appointment this morning.  Our hope was the Tyler's lung function would have increased and that all of the craziness of the last three weeks would be worth it.  But what would be the fun in telling you the end of the story, without telling you the whole story!

Like I mentioned before, this is the first time in eight years since Tyler has been on IVs.  He is so blessed with great health and this was definitely a reminder that we need to be doing everything we can do to keeping his lungs in tip top shape (which means sometimes I am going to have to be the mean one who pulls him out of bed long before the sun rises so that we can get in a nice run before work.... he hates to run!) Tyler was put on three different antibiotic IV treatments for two weeks and it sure seemed like the poor guy could not catch a break.  As soon as we made it home, after the PICC line had been put in, Tyler began to feel a tight pressure in his chest.  At first doctors thought maybe the PICC line was in wrong and so they sent us on a late night trip to the ER. Turns out, Tyler was just having an allergic reaction to the meds.  Rather than stopping the IVs though, the pharmacist just diluted his dosages which meant the IVs ran for 4 hours, two times a day.  Not fun. Luckily, I do not think he was aware of much of what was going on since the doctors put him on Benadryl to help with the reaction. I am pretty sure I have been married to a zombie for the past three weeks.  Amidst all that, he had fever and several other not so fun reactions.  All that said, when we went into the doctor's office today, I just wasn't so sure Tyler could handle it if the doctor said the PICC line was staying.

Luckily, it was taken out!  And it was like sunshine on a rainy day!  Tyler is back to his normal self and I am so, so glad.  His lung function went up 10% and it is exactly where we want it to be.  For all of you who have prayed for us and put up with our constantly change plans, we so appreciate you and really couldn't make it through times like these without you.  Let's hear it for at least eight more years of no IVs!

When life doesn't go as planned...

I wonder if any of you can relate... Sometimes, in certain moments of life, I wonder why things just wouldn't work out a little easier. And while I definitely feel this for myself, I have also found that I feel so burdened when life seems to throw a curve ball in Tyler's direction.  I can be what some may call a "perfectionist"  and I just wish I could make everything work out.  At times I think if life would just work out logically, then Tyler and I would have everything lined up.  Together with my organizational skills and his mad reasoning skills we would have all of life added up and then put into neat little boxes. Oh that life would be that easy!

But sometimes it just isn't and like my Dad reminded me when he had his recent surgery, when things don't go as planned or our body fails, it is just a reminder that this earth is not our home, that things here are not perfect, nor are they permanent. So with that truth in mind, I want to trust the Lord in these times and be refined by the moments I don't understand, can't reason, can't organize, can't control. And even more than that, I want to overflow with a deep sense of hope and joy in these circumstances. I love the way this is explained in Jeremiah...

 “But blessed is the one who trusts in the Lord, whose confidence is in Him.  They will be like a tree planted by the water that sends out its roots by the stream. It does not fear when heat comes; its leaves are always green. It has no worries in a year of drought and never fails to bear fruit."

Jeremiah 17:7-8

Well, our trip to Birmingham didn't go exactly as planned.  After being on a high from the results of the VX-770/ VX-809 trial, it was hard to hear the "doctor's orders."  We had been to Birmingham two weeks before this trip and he had told us that Tyler's lung function had dropped due to a lung infection.  We had hopes that his lungs would react to an oral antibiotic, which is normally the case in these situations.  Unfortunately, when we arrived two weeks later for our check up there was no measured improvement.  We take a pretty proactive approach to Tyler's health and so when the Doctor said he needed to get on IVs, we gave him the thumbs up.  Luckily, we are able to do them at home. It means  quite the change in our routine for sure, but Tyler is definitely more comfortable and can maintain a far more normal schedule than he could if he was put into the hospital.

In all this, we can't help but be grateful...

We are so grateful for the staff at UAB.  They are awesome, like always, and organized everything so Tyler could have a PICC line put in that same day of our appointment so we could return to Mississippi that evening. Long day!  But we made it!

Since I can remember, I knew I was not cut out to be a nurse!  I can't handle blood or pain; it's just not my thing.  But it is so true that the Lord's strength can shine through our weakness, because believe me, I couldn't do it otherwise! On top of this, Tyler has been blessed with an incredible pharmacist and for that we are more than grateful! She walked me through all the steps of administering the IVs, more than once, and called to check in on us several times the first day.  We couldn't have made it without her!

We are also overwhelmingly thankful for our jobs and feel so lucky that both of our bosses are flexible and understanding.  Whereas most business jobs only give their employees 10 days off a year, taking time off has never once been an issue for us which has allowed Tyler and I to go at this together. What a blessing!

We are also so thankful for our sweet friends and family.  The constant prayers and encouragement are overwhelming and we feel honored that you would take our burden on as your own and present it as a request before the Lord.

We are so thankful for Tyler's health.  This is the first time in 8 years he has been on IVs, which is really rare for CF patients (many find themselves on IVs annually). It's a blessing he is so healthy on a regular basis.

And all of these things are provisions from the Lord and that is the thing we are most thankful for.  We are thankful for His presence, His patience with us, the lessons He is teaching us, and for His constancy.

Thanks again for all your prayers! We head back to Birmingham in two weeks and I will keep you updated!

"The Lord is my strength and my shield. My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him" 

Psalms 28:7

I suppose it is time for an update!

As many of you can tell, my post have been few and far between!  And I hate that because there has been so much going on around here, but it is for that very reason that there has been such a lack of updating! But I guess a good overview of everything will have to do!

We Moved!
Tyler and I bought our first house and it is absolutely the house of my dreams! We are so excited and over the past few weeks we have accomplished a ton!  I quickly became best friends with a paint roller and several blank walls and Tyler was granted lawn mowing privileges again for the first time in a long time (too long of a story to tell right now, but a picture is worth a thousand words!).

Moving Day!

Home sweet home!

Yah, that happens to be a lawn mower Tyler blew up. And yes, he will be mowing our lawn... talk about serious trust! But luckily, he says he won't let it happen again!

Gotta' add that special touch!
With the help of several friends and a late night here and there our home is really coming together!  So far we have painted Tyler's office, the kitchen, the dining room, and the living room (a special thank you to Allen and Jessica!) and we are putting any other painting on hold for just a bit.  Here are a few pictures of the progress.  Along with picking out paint colors, Tyler and I had lots of decisions about furniture.  Moving from an extra small cottage, to a small apartment, to an actual house meant that we didn't have much of anything I would call substantial furniture.  Talk about decisions! Being as indecisive as I am, most of my free time has been eaten up by long lost searches for the perfect furniture pieces.  The house pictures won't have these great finds just yet, well, because they haven't arrived.  So far now... check out these great looking walls!

Dining Room Before....

And After...

 Living Room Before...

And after.... (hard to tell but its a mocha color)

I didn't have a good picture of the before, but here is the new paint in the kitchen!

More pictures to come as we add decor!

Robby turned two!
My sweet nephew Robby turned two!  And my sister and brother-in-law threw him the cutest birthday party.  He happens to be in love with Thomas the Train and so he had a full fledge Thomas the Train party.  The night before the party Amy and I had a blast making Robby a train cake and I think it turned our pretty cute and I think we will get better at our cake making skills over the years! Check out all the cute decorations my sister made. She is so creative! And she can make a bathroom shine (special thanks to Amy for helping me get the house ready for the move in!!)

The start of the cake :)

Part of the finished cake... I couldn't get a complete picture before they dug in!

Opening Presents!

Such a sweet boy!

The Thomas the Train the kids could crawl through

The ticket booth

Results from the VX-770 & VX-809 Trial are out!
For months we have been waiting to hear about the official results from Tyler's trial.  And while we haven't heard specific results on whether or not Tyler was on the drug or not (which I think everyone has already decided this as it is), we did get a glimpse into the positive results on the overall trial. Check out the official press release here:  http://www.cff.org/aboutCFFoundation/NewsEvents/6-9-Phase-2-Study-of-VX-770-and-VX-809-Results.cfm.  But to sum up that release here, basically the results were great and they plan on beginning more tests on it towards the end of this year.  We will continue to pray for more positive results, quick FDA approval, and for the possible chance for Tyler to be involved in another round.

Well that's a pretty brief summation of everything going on around here. I really hope and plan to get back to more regular updates especially since we have a lot of visitors coming to stay at our new place this summer!

More exciting new from the Cystic Fibrosis Foundation!

Check out this new article from the CF Foundation! How exciting!

CF Foundation Announces Investment to Speed Development of Additional Drugs to Treat the Most Common CF Mutation

Time Flies....

Where have the weeks gone? March literally flew by for Tyler and I and now we are committed to a very serious count down to the end of tax season!

(No worries, I am not confused... taxes aren't due till April 18th this year.)

Believe me..... the whole Blount family will be pumped to have yet another tax season behind us! But a lot has happened over the past week or so, so let's catch up!

Tyler headed to Birmingham for his last long appointment a few weekends ago and is lucky that he has such great friends who will travel with him!  Here are just a select few of the pictures they took to document the trip:

They may look (and even act) like 8th graders...but I promise they aren't.  But I love Adam's sweet backpack for his business trip :)

It was on this trip that he was given his last dose of VX-770 and VX-809.  On his first day of testing, he did the regular routine of sweat tests, blood draws, and lung function tests.  His lung function had increased to 108%! It honestly left us speechless.  Now keep in mind that almost everything in the Blount household is a game, which means that it was only natural for us to bet on who would be right at the end of the trial. So when I heard these results, there may have been a victory dance on my end.  Because you see, Tyler's vote from the very beginning of the trial was that he was on the placebo and mine (naturally the opposite of his) was that he was on the actual pill. And while we won't actually know the real results for several months.... I think I am right and at this point I think Tyler thinks I am too!  It all changed for Tyler when he went into his second day of testing. Since he had been given his last dose of the medicine the day before, all of the same tests were run again but this time the results showed a huge difference... his lung function dropped to 100%.  While the drop in lung function might seem discouraging, it is also a bright light to us because it means the medicine worked. So it is at this point in our journey that we choose to focus on the hope and the potential that this medicine may have and we pray that the research and FDA approval process will be swift! The day after Tyler got back from Birmingham, this blessing ended up in my inbox.... Proverbs 31 Devotion. God is so timely. My favorite verse from it is:

 “Thus says the LORD who made you, who formed you from the womb and will help you: Fear not…I formed you; you are my servant; O Israel, you will not be forgotten by me.” 

Isaiah 44:2b, 21b

Speaking of timeliness, although this may have been the busiest month of our lives, I couldn't have thought of a better time to have a visit from my parents. I love and appreciate their support in all things and I just love to see them!  We spent the weekend going to the zoo, celebrating my nephew's birthday, and just hanging out. It was great and the pictures show how much fun we had!

Love his new "cheese!"

The Birthday Boy! What a special little guy!! And how cute is he???

Well that's all for now... except one little hint....

Hopefully this is our last (and honestly our first!) picture in front of our apartment. More details next time!

"Getting Nosey about CF"

This video is absolutely adorable!  And after I showed it to Tyler, it may or may not have encouraged him to talk in a British accent for the rest of the evening ... anyways, the video is actually quite accurate and an easy explanation of what Tyler deals with everyday (for those questioning minds out there!).

P.S. Be sure to turn off the music playing in the background :)

Playing Catch-Up

So much has happened since my last post and so I have a lot to share!  And since a picture is worth a thousand words, I thought I would share a bunch of those too (and hopefully they will fill in whatever I might leave out). After the wedding we went to last weekend, we packed up and headed to Birmingham for Tyler's Monday appointment. This appointment wasn't too long so we also got the chance to hang out a little (which is a luxury during tax season)!

Remember those kid games you play on long car rides?  Well I think Tyler wins for finding this truck! Also, things are much funnier when you always seem to be on a road trip!

Once we got to Birmingham we stopped for a yummy dinner! 

It was an early morning, but we made it!  Getting ready to do his lung function test-- which was 107%! They still can't quite believe it :)

More sweat chloride tests....

 Can you tell he hates wearing this around? But they make him when he leaves his room.
I personally think he is cute either way!

But apparently, a big breakfast is worth wearing the mask for!

So far, all of our appointments at UAB have been great! Tyler results look awesome to me, although we still don't know whether or not he is on the real thing or just a placebo. I cannot say enough times how incredible the staff is there! Well, after his appointment, we headed home and back to work on Tuesday. Oh, and we also had to geared up for another wedding weekend!

At the reception

Since Tyler had to be at the wedding early for pictures, Tyler's mom and I had a chance to go look at a few houses. Like I have said before, apartment living has.... let's just say... been ever so exciting. So every free chance we get to go look at a house, we go!  Tyler jokingly said to me as he walked out the door on his way to the wedding, "Go find our dream house."  And honestly, I think I did! Nothing is for sure yet, but here are a few pictures of the house!

The front of the house

The living room

 The kitchen

Formal Dining (currently a music room)

Bedroom #1

Bathroom #1

Bedroom #2 (currently a play room)

Long Hallway 

Bathroom #2

Bedroom #3 (Tyler's office)

Master Bedroom

Master Bath (there is another sink on the other side of the bathroom-- I am just not a great photographer!)

Tyler got the chance to check out the house before we left for this last Birmingham trip. I was so glad I got to go with Tyler again because this appointment was a LONG one!  On  Monday we were at the hospital from 7 a.m. until 9:00 p.m.! And for a guy like my husband, sitting this long in one very square room causes stir craziness! Since this post has been terribly long, I will sum up his appointment quickly: Tyler's lung function continues to get stronger and better (and now no one on the research team is denying it). And the other big highlight of the trip is that he starts his new pill this week the XX-770 (which I explained what we hope it will do in an earlier post).  We hope that his results continue to improve and that the drug can get FDA approval soon!! We have been so blessed by precious friends who continue to pray for an awesome overall outcome, for our safety as we travel, and for strength to get through the busy weeks. We love you all!

"For the Lord is good; His lovingkindess is everlasting and His faithfulness to all generations."

Psalms 100:5