Friday, September 30, 2011

We switched to Cayston

A few weeks ago, I posted about Drew's medication plan for getting rid of his pseudomonas. We completed our two weeks of IV antibiotics and started on our 56 days of inhaled Tobi. In the past, Tobi seemed to irritate his airways, making his breathing kind of noisy and causing him to cough a lot. Since it had been 6 months since we were on it, we decided to give it another try. Today was the 10th day we were on it and I finally decided it was time to call the doctor. He would wake up sounding fine, get his regular breathing treatments and airway clearance, and then get his 30 minutes of Tobi and at the end of that 30 minutes would be coughing so hard he was practically gagging. An Atrovent treatment immediately following the Tobi seemed to help open him up and help breathe a little easier, but throughout the day he just wasn't getting back to a normal level.

The doctor described what was happening as a bronchospasm. "A Bronchospasm or a bronchial spasm is a sudden constriction of the muscles in the walls of the bronchioles or smaller airways. The overactivity of the bronchioles' muscle is a result of exposure to a stimulus which under normal circumstances would cause little or no response. The resulting constriction and inflammation causes a narrowing of the airways and an increase in mucus production; this reduces the amount of oxygen that is available to the individual causing breathlessness, coughing and hypoxia"(courtesy Wikipedia). Sounds about right.

You may wonder why we let this go on for 10 days before calling the doc, and there are a couple of reasons. First, we felt that continuing on the Tobi was important in the process of pseudomonas eradication. Second, there was no real fear that he was going to stop breathing. I've seen him in total distress and this wasn't that. It wasn't easy for him to breathe but it wasn't emergency room worthy. We were able to regain control with an Atrovent treatment (a medication that helps to relax and expand the airways). Third, I had hoped that it wasn't really the Tobi causing the problem. The girls have had little colds and I thought that perhaps he was just getting their cold which usually causing him a little bit more difficulty breathing, but after a few days of observation and being able to isolate the increased difficulty to the times when we were doing the Tobi treatments, I realized that it wasn't going to be something that we could continue on.

Drew's doctor does want us to continue on an inhaled antibiotic so that we can still try for pseudomonas eradication, so our next option is to try Cayston. Apparently there is an entirely different nebulizer system used for administering this medication that I should be receiving in the mail tomorrow. The plus side to this medication is that it only takes a few minutes to administer three times a day (like 2-3 minutes). The Tobi took us over 30 minutes twice a day, on top of everything else we were already doing, so this buys back a little bit of our time. Hopefully he won't have such a strong reaction to Cayston like he did to the Tobi, but I guess time will tell. Cross your fingers!

Thursday, September 29, 2011

Lovely day for a blog post

I really love the volunteer work that I do at Children's. It has nothing to do with Cystic Fibrosis, so its a welcome break from something that's a part of our lives day in and day out. I love meeting other families and letting them know that I care about them, that I've sat in the chair they're in and paced the hallways they're walking up and down. I've worried and wondered and cried and prayed just like they are for their sick little babies. I've been in their shoes. And when they smile at me and thank me for stopping by to talk to them even just for a few minutes it makes it all worth my while.

I met a family last night who recently received a CF diagnosis. Its not very common, as CF isn't very common, but I was able to say to them, "I've been there" and mean it in the truest sense. They asked a couple of questions, but, like us, you're kind of at a loss at the beginning, not knowing what to ask or expect or tell people or anything. You really just don't know what you don't know. I shared my email address and this blog and I hope that the family will feel comfortable reaching out to me if they need support.

Last night I watched School House Rocks - I'm Just A Bill so that I could understand a little better how Congress works. I really am not very government literate. I feel like the things I know, I know very well, but outside of that I must turn to my trusty husband who can always break it down for me. It was an intimidating part of taking on the role of State Advocacy Chair. I knew that there would be communications with political figures, and I didn't want to seem like an idiot when I was talking to them. I like to think of myself as reasonably well educated and fairly well spoken, but government and politics aren't my specialty. As long as someone can help to explain it to me and I can take the time to learn and understand myself, I'm comfortable presenting it, and I feel like that has taken me pretty far in the Make Every Breath Count Campaign.

In March, there is an event called March on The Hill where the CF Community joins together in DC to tell our story (at least that's my understanding). Unfortunately this year we won't be able to go with Quatro due to make his/her appearance around March 21, but I'll jump on any other opportunity that I have to go and speak my piece to the people making the decisions that will influence Drew's life.

Speaking of Drew, we are about a week in on our Tobi and Cipro antibiotics and all is going well. As has been the case in the past, the inhaled Tobi seems to irritate his airways a little bit more than they're already irritated which means more coughing and more Atrovent treatments to keep him open. On top of all of that, I think the girls finally passed along their colds to him so we've got a noisy breathing, coughing, snotty little machine on our hands. I've braced myself for another long winter but I'm hoping this year isn't as bad as last year was!

Monday, September 26, 2011

I'm high on today

key: FDA = Food and Drug Administration, NIH = National Institute of Health

A few weeks ago, I met with the Deputy District Director for Congresswoman Schmidt to talk about CF Policy and to ask for her support. At the end of that meeting, the District Director Sara, asked if we would still be interested in meeting with the Congresswoman. Of course, I said yes. And today was that meeting.

From the start, it was easy to see that Congresswoman Schmidt was a compassionate woman. She shared that she had grandchildren, and in fact, a personal connection with Cystic Fibrosis having lost a close friend of her daughters to the disease several years ago. I shared our story with her and she had unwavering attention the entire time. When I explained that there are lifesaving drugs right now going through the FDA for approval but could be held up if cuts are made, she replied with something to the affect of "that's simply not acceptable". She cared and she understood and she agreed to fight with us for this. We had a quick discussion on Medicaid [and everything that's wrong with it] but mostly how its working for us and for many other people that need it right now. I told her how much time we spend talking to drug companies and insurance companies and having doctors write letters and set up meetings all to get us access to a drug that we need. She gave me the name and direct phone number of someone in her office and said that if I ever again run across any problems like this, to contact this woman and she would call on behalf of the Congresswoman's office to get us access to what we need. INCREDIBLE! At one point she looked at me and said, "I really like you."

We talked about Drew and our daily lives and Cystic Fibrosis for almost 45 minutes before she had to go to her next meeting. We took a picture together (her office did, my cell phone camera crapped out on me) and just before leaving I reached out to shake her hand and thank her and she said, "Would it be aright if I hug you?" Of course!! She hugged me and said that she would love for us to come and visit her again, either here or in Washington. And if I bring the kids to Washington to be sure to get in touch with her because she would take them onto the floor with her to vote if Congress were in session. She told me that she has so much respect and admiration for what I'm doing and would love to continue hearing about it and supporting us in any way she can. The meeting simply couldn't have gone any better.

High on that meeting, I headed about 30 minutes north to meet with Congressman and Speaker of the House John Boehner. He is the Congressman for the 8th Congressional District of Ohio. We weren't sure if we were going to get him or just someone from his staff and it turned of that we were just able to meet with his Chief of Staff today. I will admit that the meeting didn't start out as I had hoped it would. Maybe it was because when we sat down I asked if Congressman Boehner was in town today. He basically rolled his eyes at me and said, "He's not here", to which I replied, "I didn't ask if he was here, I asked if he was in town." I thought hey, why not give it a shot. Maybe a spot opened up in his schedule and he happened to be free. No harm, no foul.

The man who we met with seemed someone less than excited to meet with us (probably because of the way I started out), seemingly shooting down the request that we made for him to oppose cuts to the FDA and the NIH or dismissing it as though we didn't really know what we were talking about. However, with a little bit more discussion and personal story added to the mix, he opened up a little bit and asked us some good questions. He expressed that he thought it was an excuse that organizations were making by backhandedly asking for funding when they asked for Congress to oppose cuts to the FDA and the NIH. He doesn't see these cuts, that will undoubtedly be happening, affecting things as severely as we seem to imply they will. We both agreed that something with the FDA and the NIH needs to change, when drugs for things like Erectile Disfunction or for cosmetic procedures such as Botox are on a level playing field as drugs for life threatening illnesses like Cystic Fibrosis or Breast Cancer. They all have to go through the same process, which is a long, tedious and costly process. This is when I introduced the National Center for Advancing Translational Sciences (NCATS) which is a proposed organization within the NIH that would speed the development of much needed treatments for those with serious illnesses, especially diseases like Cystic Fibrosis. I know that Congress doesn't have any money to spend right now, but adding this to their consideration for a more efficient process can't hurt.

At the end of this meeting, I expressed my desire to meet with Congressman Boehner himself and his Chief of Staff told me to email him and he would see what he could set up. In my mind, that's one step ahead of going through the district scheduler to get a meeting. I'm hopeful that we will get our meeting.

Overall, today can only be described as incredible. Everything went so well and I feel like I'm making a difference. I hope that I can continue with this momentum and help to improve the quality of life for Drew and others like him. The end!

Friday, September 23, 2011

Lung disease free are we!

I went to a viewing on Wednesday night for the husband of a former co-worker of mine. Her husband passed away in his sleep at an age way to young for something like that to just happen. It was sad. There were so many people there to pay their respect, most of whom I assume never even met the man. They were co-workers of the wife. There were people that I'm sure she'd only ever spoken to on the phone concerning a business matter that showed up because they care about her. I was sad for her. And I wondered, just for a moment, who would come out to a funeral if I lost someone I love. I know its not a good attitude to have, but when your kid has a terminal illness, a disease for which there is no cure, I can't help but have in the back of my mind the fear that I will lose him. My job as a parent is to keep my kids alive - feed them, nourish them, teach them, love them. I do all of that the best that I can, and I still might lose. I don't think that way a lot, but when something so sad as what happened to my former co-worker happens in my world, I wonder and I hope and I pray that I'm not going to be in that same predicament of trying to find comfort in such great pain and sorrow.

Drew had a hi-res CT scan yesterday. There was probably close to a years worth of debate over this with his doctors before we decided to go ahead and do it. They wanted to get a good look at his airways to see if he has any lung disease. Its mostly for benchmarking purposes, to see what it looks like now and then in a year and then in another year. The results weren't going to necessarily change any course of action or medical treatment plan, which was what caused my hesitation to do it in the first place. I get curiosity, I'm a curious person. But when it comes to putting my kid to sleep to satisfy your curiosity, I'm going to draw the line. I know that wasn't the case. I know that having the best possible look at Drew's lungs and understanding what they look like and how they handle or have handled certain treatments and whatnot will aid us in treating him in the future. And when we finally discussed a specific action plan based on the results of the scan, I was on board.

What they were looking for was bronchiectasis, which is destruction and widening of the airways, thus not allowing them to hold air appropriately and making it difficult to breathe. Its basically lung disease, which we all know is the culmination and ultimate cause of death with Cystic Fibrosis. Their hypothesis was that because of Drew's malacia, he isn't able to properly clear the bacteria laden secretions that CF patients have and he would show signs of early lung disease because of these chronic infections. We do his breathing treatments and airway clearance twice every day, but when Drew coughs, instead of being able to bring it up, his airways compress and collapse and trap the mucus in there. It is so critically important that CF patients keep their airways clear of this bacteria because this is what causes lung disease. Our plan was to start him on azithromycin 3 days a week if we saw bronchiectasis based on some newer studies about its benefits in reducing pulmonary exacerbations and preventing bronchiectasis.

Well, guess who was WRONG!!

We had the CT yesterday and the doc was supposed to call today with the results, but instead she called me about an hour after we left the hospital because she was so shocked and thrilled with the way his lungs look. There was no evidence of any bronchiectasis or lung disease, or anything of any real concern. They saw some "streaking" which they've seen in his x-rays in the past, but assume that that's just some mucus, which all CF kids have in their airways all of the time anyway. Nearly 70% of 3rd olds with CF show some lung disease on CT scan. I'm quite delighted to know that at just half that age, my boy is currently free from that. I know it will come. I just hope its slow and mild and that everything we're doing will continue to grant him good health. And I'll keep emailing and visiting our congressmen and women and encouraging them to support us in our fight so that a cure is found before we have to watch CF rear its ugly head at us.

Monday, September 19, 2011

Guess what I got!!!

I have a meeting with the office of Speaker of the House John Boehner next Monday, two hours after I have a meeting with Congresswoman Jean Schmidt (really her this time, not just her staff). I'm so excited! The director of the CF Foundation in Cincinnati is coming with me to both meetings, along with another woman I met who agreed to advocate with me. She has a friend whose daughter has CF and she Cincinnati's Finest Young Professionals award two years ago. She knows John Boehner personally and I contacted her and asked if she would be able to get a meeting set up for us. It is unclear whether or not John will actually be in the meeting yet, but if hes not at this one, Lindsay will continue to work to get a meeting set up with him. Good things are happening! We're spreading the word. This disease isn't going to cure itself :)

Thursday, September 15, 2011

A few minutes a month

This afternoon, we were playing out front when a woman with two small kids walked up. It was a little boy and a little girl, appearing to be about the same age as the twins, maybe a little older. I invited them up the driveway to play, and when I went to introduce them, the woman said, "That's Drew, right?". It turns out that she was a friend of someone who works for the Cystic Fibrosis Foundation and had heard about Drew through her friend. She mentioned that she had been talking about ways to get her company more involved in supporting the Cystic Fibrosis Foundation, since they match all donations. Sign me up, sista! Any opportunity I have to get my foot in the door with a company or individual that will support our cause is a good opportunity in my book. We talked for a few minutes and I gave her my contact information. I'm hoping that she will reach out to me and give me the opportunity to meet with some of the folks she works with so that I can share Drew's story and raise more awareness and money for this disease.

Speaking of awareness, I'm meeting with our Congresswoman on the 26th. The first meeting got changed at the last minute and I wasn't able to meet with the Congresswoman, but I did meet with a member of her staff and it turned out to be a fantastic meeting. I'm hoping that for this go-round, I will actually get to meet with Congresswoman Schmidt. The director of the Cincinnati CFF will be coming with me to the meeting. I think that having Drew's doctor with me last time was great, having both the perspective of a parent and a medical professional. And I think that this time having Ali with me will give additional perspective on the importance of the Cystic Fibrosis Foundation and all that it has done and continues to do for this disease.

All of these meetings are a part of the Cystic Fibrosis Foundations national advocacy campaign called Make Every Breath Count. When I was on a conference call with the other state advocacy chairs a couple of weeks ago, I learned that our goal was to have 75 meetings with decision makers across the country to raise awareness and support for Cystic Fibrosis. The campaign has been running since late July, and only 25 meeting have been held. I just don't even understand how its possible that so few meetings have been held. When I signed up for this position, I agreed to advocate and to recruit advocates to spread our message. Admittedly, I've struggled a bit with recruiting folks to advocate with me. I just can't wrap my head around why.

Here's what my schedule looked like on Wednesday. Alarm is set for 6:15 to get Drew hooked up to his IV antibiotics by 6:30. Sit with Drew until 7:45 when all antibiotics are complete. We are simultaneously doing his breathing treatments and airway clearance to get everything in before our day starts. At 7:30, the girls have to be woken up to get dressed so we can all go downstairs and eat before we have to leave at 8:30 to get Ella to preschool. I also have to get myself ready and pack a diaper bag because after we drop her off, we're headed to the CFF to drop off the money raised at our Oktoberfest fundraiser and to discuss what other things we currently have going on or how we can help. I'm there with the twins from 9:30-10:45 when they lose their minds and put them back into the car where they immediately fall asleep. I pick Ella and her friend up from school at 11:30 and head home for lunch. After lunch, we played for a while, and then I had to take Drew up for his 2:30 antibiotics. That is wrapped up by about 3 and I put the twins down for a nap. I play with Ella and read some books for her "homework", and by 5 the twins are up and Ella has fallen asleep on the couch. I realize that I've gotten nothing ready for dinner, so I call my wonderful husband and request pizza for dinner. He is home with pizza at 6, and at 7, its time for IV antibiotics and breathing treatments and airway clearance again. He takes Drew upstairs for all of that and I throw the girls into the bathtub. By 7:45 everyone is ready for bed. The house looks like a bomb went off in it and I realize there are several messages on the answering machine that I failed to return (doctor, insurance, marketing research company asking if I can participate in an upcoming study..., um, no, to busy). We throw in some laundry, get cleaned up from dinner and our busy day, and at 10:30 we wake up Drew for his last dose of antibiotics for the day. He usually just sleeps on me while Martin hooks him up. Its currently my favorite half hour of the day. After that, I get a shower, send a few quick emails from my iPad which lives on my nightstand, and call it a night around 11:30.

I really don't have much extra time in my days. I'm not complaining, I love what I do. But when I ask parents and relatives and friends to advocate with me and they tell me that they "don't have time", what I hear is that they don't have motivation, or the right attitude about this. I send a form email, maybe once a month, to Congress, where I insert my story because I choose to do so, not because I have to. It takes 3-5 minutes. I don't have time not to do it. If I don't request that they not cut funding to the FDA because it may affect my son's life, who will? They aren't making these decisions willy nilly (though it sure seems like it these days!). But seriously, the job of these politicians is to hear what we, the people, want, and to work on our behalf. I chose them to work for me. They need to hear and understand what is important and why its important from people who its important to. In my "spare time", I fight for my son. I'm not asking you to take every free moment you have and spend it on helping me. But if you can spare maybe 30 minutes a month to forward on an email or post a link to a new hot topic or inform your friends and neighbors about Cystic Fibrosis and Drew and why finding this cure is so important, that's all I ask. Its a break in your facebook time after the kids went to bed. Or a quick check of your email while you're watching the 11:00 news. Its so little but it means so much.

I just finished our 10:30pm antibiotic dose, with Drew fast asleep laying across me. I can't imagine my life without him. If you'll consider being a part of my advocacy campaign, click here for some more information or email me. I'm not exaggerating in the least - a few moments a month can make a huge huge difference.

Sunday, September 11, 2011

Oh What A Night

Last night was our Oktoberfest - Drinking for Drew fundraiser and to say that it was anything short of a HUGE success wouldn't be right. We had about 40 amazing friends and neighbors come by, and with their help, raised $650 for the Cystic Fibrosis Foundation! That was more than I ever could have expected. Everyone ate and drank and had a fabulous time. The weather was perfect and overall, we just couldn't have asked for a better night. Here's a few [crappy] pictures. We were having so much fun that I forgot to get the camera out for most of the night. I cannot express my thanks in enough words to all of those who support us in our fight against Cystic Fibrosis. We appreciate it from the bottom of our hearts.

Wednesday, September 7, 2011

An explanation of the PICC line

And so begins two long weeks of IV antibiotics. I just keep telling myself that at least we're doing it from home. This morning was particularly tough, given that we don't usually roll out of bed until about 8, but this morning had to get up at 6 to get Drew started on his antibiotics. We also had to do his breathing treatments and airway clearance done at the same time because we had to leave the house by 8:30 with everyone dressed and fed to get Ella to school on time. We had it all together, or so I thought. Everyone was cranky from being woken up and no one wanted to cooperate. Regardless, we made it out the door at 8:30 on the nose and had Ella to school at 8:45, the same time when Drew lost his breakfast. I don't know if it was an upset stomach because of the antibiotics, or to much to eat this morning, or car sickness, or a combination of all of the above, but it wasn't pretty. Ella was crying that she didn't want to go into school and the teacher basically grabbed her and rushed her in the door so I could take care of Drew. I had nothing in the car to clean him up with but some wipes, and prego mama can't handle the smell of puke (non-prego mama doesn't do so well with it either). So poor puke covered Drew, Lily and I headed home for some marathon carseat cleaning. Cleaning puke out of a carseat is high on my list of the worst things in the world to have to do. And when it has to happen quickly so its all washed and dried and put back together in time to go pick Ella up, it just adds to the fun. And the poor thing can't go in the bathtub with the PICC line in, so I just had to do a wipe down as best I could. I was able to put the twins down for a little nap (which they don't usually take in the morning anymore, but given they got up so early, they were beat) and get the car all cleaned up too. Then I had a popsicle and felt bad for myself for 5 minutes. That's how my morning has been so far.

I wanted to post some information on PICCs because I don't think a lot of people understand what they are. PICC stands for Peripherally Inserted Central Catheter. Here's what I found online about them:

A PICC is a long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typically the upper arm is the area of choice.

A PICC line provides the best of both worlds concerning venous access. Similar to a standard IV, it is inserted in the arm, and usually in the upper arm under the benefits of ultrasound visualization. Also, PICCs differ from peripheral IV access but similar to central lines in that a PICCs termination point is centrally located in the body allowing for treatment that could not be obtained from standard periphery IV access. In addition, PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Using ultrasound technology to visualize a deep, large vessel in the upper arm, the PICC catheter is inserted by a specially trained and certified PICC nurse specialist. Post insertion at the bedside, a chest x-ray is obtained to confirm ideal placement.


And here's a picture of where the PICC goes

And this is what it looks like on Drew's arm (this isn't his arm, but he has the same set up). When we administer the antibiotics, we just hook a tube up to this little blue port. There are no needles, it just screws in. We have to scrub it with antibacterial stuff and wear gloves and make sure everything is super clean/sterile to change the antibiotics the several times a day that we do it. It doesn't hurt him at all. He doesn't like getting the PICC line because that does hurt a little and he is restrained for it, but once its in, it doesn't hurt him at all to get his treatments.
So there you have it. Let me know if you have any questions!

Monday, September 5, 2011

This is your life.

Our big news is public. We're expecting baby #4 on or around March 21, 2012 and I'm excited. There are lots of questions I've gotten since I started telling people - are you nervous? will you get the baby tested for CF before they are born? will you find out the sex? The answers are no and yes, no, and no. I'm not terribly nervous. Of course I hope and pray that this baby will be born without Cystic Fibrosis and there is a 75% chance of that. The baby could be tested via DNA test done by amnio while in my belly, but it wouldn't change anything for us so we're not having it tested until its born. Honestly, there is nothing that they can do while I'm pregnant if they found out that the baby has CF, so there is no reason for the risks associated with an amnio. We also will not find out the sex. We didn't find out with Ella and I loved the surprise. We only found out with the twins by accident and having had kids both knowing and not knowing, I strongly prefer the not knowing. To each his own, but for us, the surprise in the delivery room is worth the wait. We're excited, and I hope everyone who reads this is equally as excited for us.

I was on a conference call last week with the the Public Policy team of the CFF and the other State Advocacy Chairs to discuss how to expand our reach and have a greater impact on government. I told Martin after the call that I just don't understand how all parents and friends and relatives aren't as involved in this as they can be. Congress isn't just going to make these big decisions willy nilly without hearing from you and I what is important and why its so important. I encourage and urge all of you to join the CF advocacy program, sending letters to your local decision makers that will affect and improve the quality of life for kids like Drew.

Tomorrow we have to go into the hospital for the day to get a PICC line to start IV antibiotics again for 2 weeks. Drew had Pseudomonas on his last culture, but the last time that he grew that before this was almost 6 months ago. Therefore they're not considering him colonized and cycling him on Tobi. Either the Pseudomonas went away and came back, or it had been suppressed so well by the last round of IV antibiotics that it wasn't showing up on his cultures or causing any problems. Either way, because it was gone for more than 8 weeks, they're making another attempt at eradication with these IV antibiotics. When talking with our doctor, she mentioned that in talking with several other doctors in our practice that there is some new evidence to show that when trying to eradicate Pseudomonas, a two week course of IV antibiotics followed by 2 cycles of Tobi (28 days of inhaled antibiotics) seemed to show more promising results. We're not certain that we're going that route yet, but should know by the end of the week. As for tomorrow, Martin will be taking Drew because the IV is done under floroscopy (live x-ray) and prego mama can't be in there with him. Also, tomorrow is Ella's first day of preschool and I simply can't miss it :)

If I sparked your interest in writing your members of congress, here's what I recently sent to mine. Feel free to copy, paste and add your own two cents. It will make a difference, I promise it will! This is my passion.
While I understand the challenges you face in reducing the deficit and balancing the budget, cystic fibrosis patients need your help to ensure that NIH can fund research that can produce new treatments, and the FDA can swiftly and thoroughly review them. These critical agencies must be able to move new therapies quickly from bench to bedside.

Drew looks healthy on the outside, but he is fighting a progressive and fatal disease. Everyday, Drew spends between 2 and 3 hours doing airway clearance and breathing treatments to keep his lungs healthy and clear of mucus. We have cabinets full of medication that Drew must take on a daily basis. The best part about Drew is that he does it all with a smile on his face. We are learning more every day, and, through Drew, we've discovered a new world of support, education, and opportunity for those living with Cystic Fibrosis. Unfortunately, it does not change the fact that there is currently no cure. We can change that!

This year has been an amazing one for the entire CF community. The money that WE have raised over the past many years helped to develop the first drug to target the basic defect of Cystic Fibrosis. That drug, VX-770, will be going to the FDA for approval late this year. I can only imagine how different our lives will be with this drug and the others in the pipeline. I can only imagine my baby healthy, without Cystic Fibrosis. We are so close to a cure. It's almost here, but we still need your help.

Strong, sustained NIH funding is essential to national priorities of better health and economic vitalization.

These important agencies contribute to the nation's economic strength by creating skilled, high-paying jobs. In 2007, NIH grants and contracts created and supported more than 350,000 jobs across the United States. A well-funded FDA can help ensure promising research is translated into new cures and reduce the cost of health care on the American economy and for American families.

Once again I urge you to actively support robust funding for NIH and FDA in Fiscal Years 2011 and 2012 and help us create better tomorrows for those with cystic fibrosis and all rare diseases.

Thank you again for your time!

Sunday, September 4, 2011


I'm reusing a blog post that I wrote several months ago, with a little to add onto the end. Happy reading!

Right after Drew was diagnosed with CF, I immediately felt 100,000 different feelings. You're scared because you don't know what it is. You're sad because your baby is sick. You're guilty, knowing that this genetic disease was passed onto your baby through you, and you wish more than anything that you could take that away. But then you look at your beautiful little being and can't help but be overwhelmed by love. As much as I hate everything about CF and Drew having it, it has changed me in ways I couldn't have ever imagined. It has made me more patient. It has opened my mind. It has taught me not to judge others unless I have walked in their shoes because you never really know the situation that you are passing judgement on.

ANYWAY, I always wanted a big family. I just love everything about being a mom, from the hugs and kisses right down to the snotty noses and potty training messes. Not that there was every a solid plan put in place, but we had discussed it from time to time and thought that the twins probably weren't going to be the last of the babies to pass through this house. Its scary to think that if we do have another baby at some point that they too could be affected by CF. I've thought a lot about it. I get upset from time to time thinking about it because on one hand I think I couldn't possibly do this with another kid. Its hard with one. Not the hours of treatments and doctors appointments, I could find time for more of that if I needed to. I'm talking about emotionally and mentally hard. No one likes seeing their kid sick, and I believe that its 1,000,000 times harder when its completely out of your control, as in no cure. But then I get even more upset thinking about the possibility of not having any more kids. I'm torn and I think about it all the time.

Martin and I have talked about it, and he said that he won't let fear be the reason that we wouldn't have more kids. And as more and more time goes on and I'm more angry at the disease than afraid of it, I agree. If I let fear win, then CF wins, and CF isn't going to win in this house.

But here's what got me. In the post I read, someone commented this: " I don't have CF and I don't think it's fair to knowingly put that on my child." I did not put this on Drew. It sucks that he has CF, and it sucks that its genetic and it is passed from parent to child, knowingly or unknowingly, but I did not put this on him. Another woman said "What burns my biscuits is when people call us names for deciding to go ahead and have children. I've read posts from those who call us uninformed, selfish, negligent and hateful. One nurse even commented that it should be illegal to procreate! What?! " Exactly!! WHAT?! I will tell you that the people who think that we're "putting this on the kids" or who think we are "uninformed, selfish, negligent and hateful" are actually the ones who are uninformed, selfish, negligent and hateful. These are probably the same people who would choose to have an abortion if they would learn that something wasn't right during their pregnancy, and I'm the one being called selfish. That baby, any baby, needs the love of two people more than anything in the world, from the first moment it becomes a being. Parents who are blessed with a child with any sort of disability, no matter how mild or severe, are the strong ones. We are the knowledgeable ones. We are not selfish, in any capacity. We give our everything, everyday, so that our kids can be whatever it is they are here to be. Andhateful? How dare you!! How DARE you call me hateful for wanting to have more children. I am the opposite of hateful. I have more love to give that you in the simple fact that I want more of these wonderful beings. I have the most wonderful gift that I can give the world and its called children. I know that there is a 25% chance that any of my children will be affected by CF but that doesn't make them any more or less worthy of existance. I know a LOT about the disease. And I participate in the search for the cure, so that God forbid one of your children ever be affected by something so horrible, there may be more help, more answers, a cure. Maybe my son will go on to find that cure.

I wanted to finally make the announcement that our hearts will be even more full next spring when we welcome baby #4, or Quatro and he/she is currently being called. There is a 25% chance that this baby will have CF. There is a 75% chance that they will not. We're praying for the latter, but will take whatever we get!

Friday, September 2, 2011


The culture came back positive with pseudomonas. We're getting a PICC line on Tuesday to start IV antibiotics.