Saturday, April 30, 2011


Thats how much we raise THIS WEEKEND for the walk. No lie! Friends held a bake sale and raised $450. Other friends had a garage sale and made $550. I had two photo sessions and the weather held up beautifully, earning me $200 to put toward the walk. We raised $1200 in 1 weekend and I think thats incredible! And its only Saturday night!!! Next weekend is the Sicilian Dinner Fundraiser in Reading, PA. I'm doing my best to publicize that from afar and hoping for another success. At the end of the month i'm having a yard sale here in Cincinnati and I'm hoping we can compete with the $550 raised at the PA sale. As a team, we've raised $12,141, not including the $1200 raised this weekend, or another $750 I mailed in last week

On May 1, 2010, I started this blog. One year ago. I went back and read my first post. I obviously didn't stick with calling CF sixty five roses. The more we got familiar with CF, it just seemed easier to say CF. That post is full of the textbook jargon and statistics on what CF is. I thought that tonight would be a good night to post on what CF is to me now.

Tonight, CF is keeping me up until 10pm to hook Drew up to his IV pump and get him his [every 8 hour] dose of antibiotics. It will wake me up at 6am too. CF cost me $5 at Target tonight on sani-hands wipes which I use like water to disinfect Ella after preschool, clean off a dirty Lily after she empties trash cans and plays in the dirt, and wipe Drew's hands before and after he eats or whenever he puts his hands near his mouth. CF has me looking for a trustworthy and reliable babysitter who can watch the girls while we have to take Drew for one of his regular bronchoscopies or doctor appointments, or who I can trust to administer enzymes in the right dose. I hardly trust grandparents to do that, so it might be some time before I find a babysitter I deem responsible enough to do that. CF takes my Ella time away from me when the twins nap in the morning, as I spend time on the phone with nurses or dieticians trying to figure out how we need to adjust enzymes and whether the change of form in his poop is from antibiotics or another reason. CF is Ella telling the kid at the park "good cough!" when hes got a wicked cold and is spreading germs all over the place because he's not covering his mouth, because she always hears us tell Drew "Good Cough!" when we're whacking him on the back trying to loosen up the mucus that has him sounding like a 65yr old pack a day smoker.

CF isn't my life, but its so much of my life. I do my best to find balance, but get terribly frustrated when we want to have a family night going out for ice cream, but an IV antibiotic schedule prevents us all from participating. There's always a new drug being added or a change we need to adjust to. While I hope for it, I don't think that the normal that we use to know will ever come back.

I try not to think of CF as a life shortening disease. I try to think of it as something Drew just has that we just deal with. I don't often wonder and worry about what is going to happen. I really just try to take things one day at a time. I remember thought, when he was first diagnosed, going through the rest of my life in my head and thinking about all that we'd be giving up. No more vacations because we couldn't be away from his doctors. No playdates with friends who could carry potentially deadly germs, like the common cold -something annoying for a kid or the parent of a kid without CF, but simple detrimental to the health of Drew. I remember thinking that I'd never be able to go out with my girl friends, or that Martin and I better get use to never going out again because we have to do his airway clearance first thing in the morning and last thing at the end of the day. And on top of all there was to do and manage, the sheer cost of having a child with a disability was just so overwhelming. But it all goes through your head right at the beginning. And now that I'd had a year to live it and get to know it, its so not what I had imagined it to be. For our 4th anniversary, we got a babysitter for the girls so that we could enjoy a take out pizza together in Drew's hospital room, allowing us to spend an hour together on a day so special for us while not having to leave his side. It was perfect.

Sure, things have changed. But to be perfectly honest with you, they've changed for the better. I'm a better person. What I've learned and what I've gained through this experience is unparalleled. Perspective and priority has changed. A while ago, I had posted the lyrics to a song by Michael Buble called "I Just Haven't Met You Yet", and stated that they describe how I feel. Here they are again:
"...And I know someday that it will all work out. You make me work so we can work to work it out. And I promise you kid that I give so much more than I get....I might have to wait, I'll never give up. I guess its half timing and the other half's luck....And I know that we can be so amazing. And baby, your love is gonna change me. And now I can see every possibility..."

CF sucks. I hate that we have it, that we have to deal with it, but I can't change that fact. I can only change my attitude about it. I take every day one at a time. I try not to think about all of the what-ifs and statistics. When something new comes up, we figure it out. Trying to manage his whole life, our whole lives, from one given moment in time is unreasonable and unrealistic. CF has opened new doors in my life. I've met some wonderful people that I wouldn't have ever come to know without it. And who knows, maybe we got Drew because the CF world needed someone like me ;-)

This past year of the blog, I've reached over 14,000 people. I've gotten emails from all over the country, sharing their stories with me like I've tried to share mine. And I love that so much. I hope that this next year I can continue to tell our story, our journey with CF. I hope I can continue to have a positive impact on the CF world. Thank you to everyone who has continued to bear with me and support me with my fundraising efforts. I hope many of you can come to walk with us, in whatever city you live in. Team Doin It For Drew is walking in 8 cities and we'd love for you to be part of it.

Happy Anniversary, blog. I'm toasting you with a hefty glass of red.

Thursday, April 28, 2011

Why I need to keep a bath crayon in my shower

I feel like the 10 minutes a day I spend in the shower are some of the most productive for my thoughts. Then, by the time I get out, dry off, get dressed and wrap up whatever else I need to for the day, I've forgotten all of my good thoughts and when I get on the computer to blog about whats been going on, I have nothing. But I have so so much I want to share. I'll give it shot....

IV Antibiotics
My sweet baby boy slept on me while the IV pump hummed on the table just over my shoulder. I hate that we have to wake him up to get him his 10pm dose, but it is oh so much better than the alternative of being in the hospital. With his head on my chest and his arm draped across me, I can smell his sweet breath and could just live in that moment forever. There is truly nothing better in the world than a watching sleeping baby, innocent and carefree. My heart so full of love for him that it could just burst. And then the buzzer goes off on the IV and I must return him to his bed where I know he will rest better.

Tomorrow, some friends are holding a bake sale at my husbands office to raise money for our walk. I grossly underestimated the time brownies take to cool before you can cut and package them. I'm working on batch 5 as we speak. I'm trying to print out some pictures and donation forms so that we can make the most out of the event.

I'm also trying my best to drum up some support for the Sicilian Dinner fundraiser that some members of our Philadelphia team are hosting. Its on May 7 and I want it to be a success. I want everything to be huge. Maybe thats my problem - I'm going for breadth and depth and should really just focus on one or the other. I can't though. I've gotta do it. If not me, who will.

We had Chinese food for dinner the other night, and this is what I found inside my fortune cookie:
Giving will make you smile. And I don't mean just donating to my walk. Giving your time, you're energy, your attention. Giving will truly make you smile.

I mentioned a while back that I was going to be volunteering for a new program they are starting in the NICU at Cincinnati Children's called Parents TOUCH (Together Our Understanding Creates Hope). I talked with a mom of 9 today who is currently involved with the program and was reaching out to me to let me know how much I will be able to get out of this by giving myself to the parents who currently have a child in the NICU like I once did. Just talking to her motivated me. I want to do this. I don't have a lot of free time, but I want to give back. I want to help other people and this is just the way to do it. This woman had described the program as the missing piece in her life that made her heart complete. She's got 9 kids, and this is what made her life complete. I've gotta do it.

Another way I'm giving back is by volunteering as the State Chair for the CF Advocacy program. I'd love to make it more than it is. Its really not a lot of work, and I don't want to over think it, but I want it to be impactful. Right now, it involves emailing legislators when public policy issues involving Cystic Fibrosis arise. By emailing I mean personalizing a form letter to preselected governors and congress people and representatives. You can almost immediately expect a form response from them thanking you for your email. They must get hundreds of emails a day. I want them to remember me. I want to show them a picture and see the raw emotion of a parent who deals with this day in and day out. I want to take people to meet them and share their story, and I won't quit until I get what I want. Sidebar: If you know me and my negotiating skills, I will succeed.

The tough thing here is the time required to do this, to actually make this happen. I want to sit down and research things and have a better understanding of how systems work and what I need to do to get what I want. I'm asked to recruit a team of advocates, and I'm still looking. Of course any family members reading this will be emailed asking for their support once I get my act together, but what I need for my "team" is folks from Ohio who will help to support me. And I promise you that your work will be limited. I won't ask you for much. I will happily write the emails and contact the appropriate people. I just need you on my side. If I need another story to share, I need you to offer yours. If I get my way and can meet, face to face, with some of these people, I want you to come with me and bring your pictures. Maybe a day a year. Just twenty-four hours in a whole year is all that it would take. Can you help to support me on this mission? Susan G. Komen had a passionate sister who created an empire to raise awareness and support of a cause near and dear to her heart. I want people to say that about me someday. Email me if you will join me.

Maybe with a bath crayon in my shower I can organize my thoughts a little better and post more often. If you're in or around Reading, PA next weekend, come to our spaghetti dinner and tell everyone you know about it ($15 for adults, $7 for kids). Here's the link again -

Quick funny story unrelated to all of this that I think is cute enough to share. Lily has taken to biting. Her teeth are razor sharp and it seriously hurts. I've yelled at her. I've put her in time out (as well as you can put a 1yr old in time out). I've even bit her finger, just lightly, to show her that it does not feel good. Yesterday she got mad at Ella and bit her. Ella cried and Lily went to timeout. I had told Martin about it, and that night at dinner he asked Ella what happened today with Lily. Ella's answer - "She tried to eat me!"

Tuesday, April 26, 2011

Fundraising Dinner for Drew

A great family friend of ours, who happens to be an excellent chef, is having a fundraising dinner to raise money for Great Strides on Saturday, May 7. It will be held at the Bravo in Reading, PA and is guaranteed to be a delicious and fun evening! Here is a link to the Facebook invite - with all of the details. There will be great food for a great price and a great cause. Hope you can attend!

Monday, April 25, 2011

The right dose

Just when we thought we couldn't possibly squeeze one more time consuming activity into a day, Drew's antibiotic schedule got changed. We had been giving him two different antibiotics, one after another, 3 times a day. When they checked his drug levels on Friday, it came back that they were to high and his kidneys weren't clearing the medication as well as they should. So the doctor ordered a stronger dose of medication to be given twice a day rather than 3 times a day. But only 1 medicine. So now we have 1 antibiotic administered a 6:30am, 2:30pm and 10:30pm, and another given at 7am and 7pm. We had a wedding to go to Saturday night and were just going to make sure we were home by 10 to get him started, but since we had to do it at 7pm and 10:30 we decided that Martin would just stay home to get it done. It was a bummer that he couldn't come, because it was one hell of a fun wedding!

We had my family in town for Easter this year. Although chaotic, it was 10,000 times better than last year when Drew was in the NICU for Easter. We did have a homecare nurse show up about 5 minutes after we sat down to eat, because she needed to test his drug levels on the new dose and schedule. I just got a call that they are now a little bit low and they are going to strengthen it just a bit...and check again tomorrow. I don't really care that they have to keep checking. I want it to be right and kill all of the bacteria we're trying to kill while not causing harm to his kidneys. But when they have to come to check it, they have to finger prick him twice (once before we start and once 30min after the drug is done running). This means hes screaming his head off while they're doing it, and he also is exhausted because he can't just go down for a nap after he gets the meds like he has been because they need to check it at the end. It also means being home and available to let the nurse in, who inevitably shows up 30 minutes to early or to late. Again, I shouldn't complain because at least we're not in the hospital. Its just a pain. But you do what you've gotta do. I'm just waiting for the doctors appointment when they tell me they've got a pill he can take that will make this all go away. Its coming, I know its coming. Patience is not my finest virtue.

Thursday, April 21, 2011

Net +2

We got a PICC line put in yesterday so that Drew could start his IV antibiotics. Luckily they were able to do it with him awake and there was no need for us to be admitted for general anesthesia. It wasn't the most pleasant hour of his life, but he survived and we didn't need to spend the night.

We had been on inhaled Tobi, which added about an hour total to our already packed schedule. Now that he's on IV, we don't need to continue with the inhaled Tobi so we get that hour of our day back. Unfortunately, the IV infusion takes about an hour and we do that 3 times a day. So we net out at an extra 2 hours of treatments added to our day. The schedule we're currently working on is 6am, 2pm and 10pm. We picked those times because the girls are asleep then, and it just makes it easier to sit with him and get it done without trying to manage them as well. Unfortunately, this means waking him up at 10 to get hooked up. He did fine last night and thankfully is a pretty laid back kid, so hopefully he can just go with the flow.

When I was at the Research Symposium for CF last week, Dr. Clancy started out his presentation acknowledging the time constraints that are put on parents when they have a child with CF. Drew is on a lot of medication now, but as kids get older they tend to get put on even more (of course depending on their health). As kids get older, more and more is added to their social schedules, as well as to their medical care, and nothing ever really gets taken away. You simply can't add more hours to a day. And part of his focus is finding ways to administer the much needed drugs and therapies that these kids need in a more efficient way. I totally appreciated his acknowledgement of that, because many people don't.

I remember talking with Help Me Grow about how Lily was sitting before Drew, and then how Lily was crawling before Drew, and now how Lily is walking before Drew, and the coordinator said to me that it wasn't surprising because Drew is stuck sitting in front of the TV hooked up to his Vest and breathing equipment 2-3 hours a day, while Lily is free to do as she chooses. They weren't at all concerned with his development, just not surprised that he was a step behind Lily in physical achievements. She had a great point. A few weeks later, when Drew got put on Tobi for the first time and they recommended increasing our airway clearance to 3 times a day, I voiced my concern that all of this time we spend on him in a day was causing delays. Our schedule, for a long while, went something like this: 7am-Wake up. Breathing treatments and airway clearance until about 8:30. Breakfast. Play for 45 minutes. Nap from 10-12. Lunch. Play for 45 minutes. Airway clearance and breathing treatments for 30-40 minutes. Nap from 2-4. Play from 4-6. Dinner. Breathing treatments and airway clearance from 6:30-8. Bedtime. That is a lot in a day. And it was me managing it while trying to keep a 2 year old entertained and another 1 yr old out of trouble. It was a lot, but it was what he needed so we made it work. Now we're adding IV. It is SO much better than being in the hospital, but its a lot! I miss our carefree days of going to the park with no end time in sight, trips for ice cream after dinner on a warm spring night, or an impromptu family outing to the zoo on a nice Saturday morning. They still happen, but everything has to be planned. If we leave the house while we have the PICC line, I must have our emergency PICC care kit with me. Its a central line, and if it breaks or gets pulled out or somehow otherwise compromised we could be in serious trouble. So we're going to just play it close to home for now, at least until we have a better grip on this new adventure.

I'm looking forward to a nice, long, relaxing Easter weekend. I'm taking pictures for some friends (remember this post about donating ALL SITTING FEES to our Great Strides Team), going to a wedding, and hopefully sitting my lazy butt on the couch while the grandparents play with my children. I hope the IV antibiotics get rid of Drew's pseudomonas and I also hope that everyone reading this has a wonderful Easter!

Tuesday, April 19, 2011

IV Antibiotics

Drew started Tobi again on April 2 as our second attempt to eradicate his pseudomonas. Similarly to his last Tobi treatment, almost immediately after starting it he started sounding worse. I took him in to the doctor yesterday, almost 2 weeks in to his treatments, and they decided that perhaps IV treatment was a better option for us. Given the complexities of his airways, they just can't be sure that he's getting the appropriate amount of the inhaled antibiotic, and with his age, IV antibiotic to aggressively treat and eradicate the pseudomonas is our best option. So tomorrow morning we're heading to Children's to get a PICC line, and the training from the home care team on how to administer the drugs from home because I was adamant about not being put in the hospital. First of all, he was in the hospital last year for Easter. Second, there is nothing good about being in the hospital. In my opinion, as I've stated before, he needs 4 things to get better - IV antibiotics, airway clearance, good nutrition and rest. If we can satisfy all of that from home, we are good. And we can. So after he gets the PICC tomorrow, we will get trained by home care nurses and hopefully be able to bring him home and do all of this from the comfort of our living room. The only thing that would put a wrench in my plan is if they are unable to place the PICC. He will be awake for it and they will pin him down the best they can, but if they are just unable to do it because he gets to worked up or is moving to much, they will need to admit him and have him sedated to get the line placed. Lets hope the plan goes the way its supposed it. The antibiotic will run every 8 hours for 2 weeks, and in all likelihood will get rid of his pseudomonas and whatever other bacteria he has thats causing him breathing trouble. Our fingers are crossed. If you could kindly cross your and pray for a festivus miracle (or Easter miracle I suppose) we would certainly appreciate it. More to come...

Friday, April 15, 2011

Chapter Advocacy Chair

The other day, after I attended the CF Research Symposium at Children's, I wrote an email to Ali Bethel, the director of the Cincinnati Chapter of the CFF, thanking her for inviting me. Whenever I send an email like that to someone connected to the CF world, I always end it with "If there is every anything I can do to help, please don't hesitate to ask". I got an email back this time. Ali told me about a volunteer position that had been a huge void in Cincinnati and she felt that my personality would be a great fit. The position is for the Chapter Advocacy Chair and here's a basic job description:
The Advocacy Chair (AC) position is a volunteer role that can have a significant impact on the way CF issues are treated in Washington. The AC spearheads the Foundation’s efforts in each state by building relationships with targeted Congressional offices in order to increase support for the Foundation’s policy agenda. Essentially the main responsibilities of the Advocacy Chairs are:
  1. Participate in the quarterly Advocacy Chair conference call and keep up with the regular update emails sent by the Public Policy Department (the day after calls, we always send a full recap for those who aren’t able to make it along with a list of next steps).
  2. Follow up on the action items covered on the call/in the emails, which usually involves regularly meeting and otherwise communicating with Congressional offices about the Foundation’s current policy priorities.
  3. Recruit 5-10 Network Advocates (usually friends, family members, or others in the CF community) in the local area.
  4. Use the tools and information the Public Policy department provides in order to facilitate and direct the efforts of these Network Advocates to attend meetings, call andwrite Congressional offices, and otherwise support the efforts of the Advocacy Chair.
I think I can handle that. I have a conference call with the National Advocacy Chair next Thursday to learn a little bit more about what I'll be doing. We'll see how it works out!

The other thing I did after the conference [where I met so many wonderful and fascinating people] was to follow up with one of them. Specifically, Robert Beall, the President and CEO of the CF Foundation. I didn't have his email address, but it wasn't hard to figure out following the format of the others I know who work for the same place. I just wanted to re-introduce myself, say "Thank You!" and let him know that if there is ever anything that I can do to help to please let me know. Well guess what? He wrote back! I'm telling you, these people in the CF world are like none other. They aren't just doctors and nurses and researchers and business men and women who go to work and do their job and go home and forget about you. They care. They truly care and are honestly working with you and for you. Bob (we're on a first name basis now) remembered the picture I showed him of Drew and my grandfather (his great grandfather) and he said that he appreciated the note and thanked me for doing all that I do for CF. Bob, you made my weekend.

I told Martin that I had emailed Bob and he compared me to the new intern who invites the CEO out to lunch. I got all defensive, saying that you never know when you're gonna need help from someone, and the big guy in charge is a good guy to have in your back pocket. Networking, in most walks of life, is key and its not different with CF. Martin then said that he had no problem with it, that intern becomes legendary. I'd like to be legendary!

Finally, the health update for the week. Even though this is only our second run on Tobi, Drew seems to get really noisy when hes on it. By noisy I mean sounds like hes got a major frog in his throat all the time. But that noisy, over the past few days, has slowly turned into lots of coughing and some difficulty breathing. I called the doctor and they're going to put him on steroids for a few days to try to get rid of some of his inflammation and hopefully allow him to clear whatever hes got going on without more antibiotics. If the Tobi irritates his airways even more than they're already naturally irritated by CF and then extra by the malacia, its seems for him to just reach a point where he gets into some distress. Hopefully the steroids will knock it out and we won't need something new.

That's all I've got for now! Hoping for a relaxing weekend.

Wednesday, April 13, 2011

One Year Ago

One year ago tomorrow, Drew came home from the NICU at Cincinnati Children's where he had spent the entire first month of his life. I hadn't been back to the NICU since we'd left on that sunny, warm day. I remember that we had taken Lily with us, mostly because I was still nursing her and you never can tell just how long discharge will take, but I think also because we wanted the two of them to be together. We drove home in separate cars because we had 2 at the hospital, and Drew came with me in the van. If not #1, it was definitely in the top 5 for best days of my life.

I'd often thought about stopping back in to the NICU to say hello to many of the familiar faces and wonderful nurses and doctors that took such good care of Drew and of us for that horrible month, but everytime we were at the hospital there were a dozen other things happening and I just never got the chance to. Last night, I went back to the NICU. Let me explain...

A few months ago, I saw on the Children's Facebook page that they were looking for volunteers to be a part of a program called Parents TOUCH, where parents who had previously spent time in the NICU volunteer to visit families currently in the NICU to let them know that you were once in their situation and that they were going to be okay, no matter their outcome. I'd been looking for something like this to get involved in - giving back a little - and this looked like the perfect thing for me. I contacted the woman in charge, and a few weeks later we met for coffee and there was an instant connection.

Last night was the orientation for the program. I had been at the hospital all day for the Thomas Boat Symposium on Cystic Fibrosis (i'll get to that shortly) and the orientation for Parents TOUCH was at 5pm. The woman in charge met the 3 people who had been chosen to be a part of this program, myself included, and up we went to B4. I felt like I hadn't been there in ages. The lobby of the NICU had been redone and looked so warm and clean and welcoming. I hardly remembered what it use to look like, as my time spent on that floor was mostly a blur due to emotions and exhaustion.

We started the training by introducing ourselves to the current volunteers (there are only 4) and the nurse assisting with the program, and by sharing our story. Almost everyone got choked up when it was their turn to talk. I don't know if it was just being back in that place or what, but I hadn't been asked to recall my time in the NICU, well, ever, and it just wasn't the most fun memory I'd had all day. And that was the point of the program almost exactly. Parents currently in the NICU are in the midst of those very emotions, and our job, as volunteers, is just to offer them support. Some may not want to talk to us while others might be so grateful to have someone who knows exactly what they are going through.

Then we started our tour. We'd all been there. We'd all seen these rooms and these hallways before. But having been removed from the situation for just about 1 year exactly, I guess I had forgotten what it really felt like to walk them. The babies are so so tiny, all hooked up to monitors and machines, while worried parents and grandparents rock them or pace the halls hoping for good news from whoever will give it to them. It sucked!

We continued our tour and before I knew it we had gone through the doors into the B-pod - the private rooms. Right smack in front of my face was B6, our room. It was empty, but my heart just sank the moment I saw it. So much happened in that one small space! Drew was clinging to life with a ventilator breathing for him after 2 surgeries when he was less than a week old. Doctors in masks and gowns showed up day after day, before the diagnosis causing us to wonder why they were treating our son like something contagious that they couldn't touch without protective gear and then after the diagnosis glad that they were wearing what they were wearing so that no one gave him anything. The dreaded official diagnosis happened in that room. We met with dozens of doctors and nurses and social workers, physical & occupational therapists, dieticians, chaplins who performed a baptism with Similac Sterile Water, Child Life specialists, financial specialists, you name it. So much happened in that very room which was sitting empty in front of me and it brought back WAY more emotion than I had expected.

When we finished our tour, I asked the 1 volunteer if she ever got emotional when shes talking to these other parents, because part of the deal is that we're sharing with them as well. She has a daughter who is 25 years old, meaning that she is 25 years removed from the NICU, and she said she gets emotional almost every time. I told the lady in charge that I just didn't know if I could do this! I don't want to emotionally throw up on these poor parents who are in the midst of quite possibly the worst time of their lives. I'm there for them! And the current volunteer told me that in a crazy way, its healing for both of us. She said that when parents can see that they are allowed to be emotional, that they are allowed to be scared and angry and to ask or demand answers, that they will open up to you like they would to a nurse or a social worker or someone more official. You're not judging them, you're just there to listen. And at the end of your shift, you decompress, leave as much of it as you can at the hospital, and go back home and enjoy your life. You're simply there to make life better for a scared mom or dad for just a short time.

I want to do it, i'm just not sure if I'm ready to do it yet. Not all parents are as fortunate as us. Some of those parents won't get to take their baby home. Its the sad and scary reality of the NICU. Its a terrible terrible place to be, and to have someone whose been there, who knows what its like share their experience with you, it has to be helpful. And I'm not the only one having these feelings of concern about the program. The other two girls were equally as emotional and concerned about being able to handle the stress of the job. The people running the program told us that all we can do is try, and if after 1 time we decide its just not for us they will totally understand and try to help us find a better fit. Its just twice a month. I'm not sure when it starts but I'll give it a whirl and see how it goes. I hope it goes well.

Now, to take things in a totally different direction, yesterday I had the opportunity and privilege to attend the Thomas Boat Research Symposium on Cystic Fibrosis at Cincinnati Children's Hospital. I wrote about it before here, but yesterday was the big event. And below is a picture of who I believe will be the two doctors responsible for the CURE for CF, Dr. Thomas Boat (right) and Dr. J.P. Clancy (left).

So let me tell you who these guys are. Dr. Boat is probably the biggest and most influential CF doctor and researcher over the past 50 years. He has held the chair position at a number of Children's hospitals and is a world renowned doctor and researcher. He is the immediate past director of the Childrens Hospital Research Foundation and past Chairman of the University of Cincinnati College of Medicine's Department of Pediatrics. You can read all about him by clicking HERE (its totally worth it!)

Because Dr. Boat was so influential to both Cincinnati Children's and to the world of CF, a chair was created in his honor, the Thomas Boat Chair, and Dr. Clancy is the first person ever to receive this appointment and honor. The Powerpoint slide that came up on the screen said that the purpose of the Thomas Boat Chair was "to make a difference and change the world", and I do believe that Dr. Clancy will do that in his role as Thomas Boat Chair.

Dr. Clancy is probably about 20 years younger than Dr. Boat if I had to guess , but equally as impressive in his accomplishments. He recently moved from his position at the University of Alabama to Cinicinnati Children's to continue his research and search for the cure of Cystic Fibrosis.

Dr. Boat & Dr. Clancy both presented on different topic surrounding Cystic Fibrosis, as did about 8 other top doctors and CF researchers from around the country. Robert Beall, the President and CEO of the Cystic Fibrosis Foundation was also there to tell folks about the great work that the CFF is doing to support the efforts of all of these great researchers and doctors. There was so much fascinating information about how far we've come over the past even just 10 years. And the message of hope was just astounding. I learned that 3% of the gross revenue from Cincinnati Children's Hospital every year goes directly to CF research. Thats HUGE! That's how confident people are that a cure will be found, and soon. Check this out - HERE is a list of breakthrough discoveries that have taken place at Cincinnati Children's Hospital. Hopefully we can add "Cure for CF FOUND" to that list soon.

There were a few big-wig researchers at the event that mostly talked over my head, but when I asked our doctor to clarify what I had understood, she admitted that he was talking a little over her head as well. Here's two things I found terribly interesting. I might botch this a little, so don't hold me to this exactly. First, a man named Dr. Christopher Karp, spent some time discussing the CF testing that has been done and is being done on mice and pigs. Mice, for a long time, were bread to have CF so that appropriate testing could take place. However, there was a great struggle to mimic the disease and researchers pinned it to just different anatomy in humans and mice. However, recently, someone (and I'm not sure if it was Dr. Karp or someone else) thought that maybe it had something to do with temperature. So humans, for example, naturally hold ourselves at what is called a thermoneutral temperature. Basically, when we are sitting on the couch expending zero energy, our body and systems slow and keep us at comfortable temperature while using as little energy possible to maintain that temperature. The mice in their cages in the labs were being kept at a humans thermoneutral temperature. But apparently they were freezing, because the thermoneutral temperature for mice was 30 degrees warmer than that of humans! Who knew! So when researchers looked back, they thought that perhaps the real reason that mice with CF weren't developing lung disease like people with CF was because the cold temperatures they were living under was preventing the production of something (I don't remember what, mylo something maybe) which was decreasing the inflammation seen in CF lungs and preventing lung infections. Hmmmmm....

Dr. Karp went on to discuss the association between inflammation and infection in a "which came first, the chicken or the egg" type presentation. I asked Dr. Burns (Drew's doc) about this after the presentation and she said that a lot of the new research and thinking around CF is to treat the inflammation to prevent the infection vs. just the thick mucus causing the infections and the inflammation providing some extra difficulty in getting rid of it all. (I completely understand that I'm probably botching all of this, but its what I took way, and thats it).

Another presenter discussed a discovery that was made just 3 weeks ago about a treatment for inflammation that could be directly related to the eradication of pseudomonas and b.cepacia. Another doctor talked about the benchmarking that the FDA and NIH uses for approving drugs and the "disappointing results" of Denufosol in clinical trials. He said that the trials were done on folks with already "good" by CF standards FEV1 and that the goal of seeing x% improvement was unrealistic given that they were already in such a good place. Had the FDA looked at their trend over time using the same data, they would be able to have clearly identified an improvement over folks not on the drug, however now due to "disappointing results" which weren't exactly as disappointing as they were presented, many folks who could have benefited from this drug will never have the opportunity to. There is work toward understanding what benchmarks need to be put in place to ensure accurate and appropriate reporting of results going on right now and hopefully we will hear about some changes soon.

There was really so much discussed at this conference that theres no way I could go into all of it, especially with my low level of understand what it all means to me. All I know is that there was so much forward momentum and hope at this event that it refreshed my outlook. It might still be some years away before a cure is found. I do still hope its found soon enough for Drew, and I'm not naive to the reality that this awful disease truly is. I'll harp on it one last time because if you've gotten this far into this post then you're committed, it depends on US! It depends on our donations and our support to fund the research that will cure this. Can you please help with a small donation (or large if you want!). Click here, its that easy :)

Friday, April 8, 2011

My Daily Truth

I get daily emails from a website called The Brave Girls Club, and I really do enjoy them. I've been thinking so much lately about my life and situation and comparing it to others lives and situations. I choose to be a stay at home mom and I feel that its best for me and my family. If I thought that daycare was better for them then I'd send them to daycare. I don't. I think what I do for them is best. I prefer evenings with my whole family to evenings out with my husband, though I certainly do enjoy those too from time to time. A minivan was the right choice for us. Not everyone likes them or needs one but for us it works. The way I discipline my children is my choice and no one else's (well, Martin gets a say). When and where I send them to school is also my decision, and I will choose what I feel is best. The point here is that what is "best" is different for everyone. I hate it when someone tries to shove it down my throat that they are doing this, that or the other thing when what I have chosen is something different. Obviously, what they are choosing to do is their decision and what they feel is best for them and their families, and the same goes for me.

Here's the email that I got today from The Brave Girls Club:
Dear Unique Girl,

Everyone has a different journey. So different, in fact, that new lessons can be learned every single day from each other's journeys. Your friend's journeys are different from yours. Your children's are different, too. Your parents also went on an entirely different journey than the one that is meant for you.

That is why it is so important not to compare, criticize, or complain. We often have the tendency to compare the worst of what we are living through with the best of what others are enjoying. Everyone has the exact path, with the exact battles and the exact joys that are meant for them. We all learn in different ways, and we can all learn so much from each other, too.

So, live YOUR life. Love YOUR life.

Make the most of YOUR life.

And whenever you have the chance to meet another fellow traveler along the road of life, lend a helping hand whenever you can. An encouraging smile or a kind word or two. Be happy when good things happen to others and show compassion when difficult things come along. Remind those you know that ALL of it is good. All of it.

All of it is meant for growth and our ultimate joy.

Keep being the fabulous YOU that YOU are.

Thank you Brave Girl's Club. I needed that today. And I will keep being the fabulous me that I am :)

Thursday, April 7, 2011

An Announcement from the CF Foundation and Vertex Pharmaceuticals

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

April 7, 2011

Today the Cystic Fibrosis Foundation announced the expansion of its collaboration with Vertex Pharmaceuticals for the discovery and development of additional drugs aimed at treating the underlying cause of cystic fibrosis.

The new program will support development of a potential new drug called VX-661, designed to treat people with the most common genetic defect in CF, the Delta F508 mutation (this is one of Drew's mutations. YAY!). Nearly 90 percent of people with CF in the United States have at least one copy of this mutation.

VX-661 is known as a “corrector” and aims to move the defective CF protein to its proper place at the cell surface. Another corrector, known as VX-809, is already in clinical trials. By developing multiple correctors, the Foundation increases the chances of bringing new therapies to the CF community as quickly as possible.

“This new agreement will further leverage the successful collaboration with Vertex to accelerate the discovery and development of new drugs to treat a wide variety of CF patients,” said Robert J. Beall, Ph.D., president and CEO of the CF Foundation. “Given the recent announcement of promising data of other compounds in the CF pipeline, we’re optimistic that the CF Foundation is on the right path to fundamentally change the treatment of CF by targeting the cause of the disease.”

The Foundation’s investment, which will be up to $75 million over five years, will also expedite the discovery and early development of other new correctors.

“The CF Foundation is widely recognized by doctors, nurses, scientists and those with CF as a driving force in the search for new CF medicines, and we are pleased to further expand our strong collaboration with them,” said Matthew Emmens, chairman, president and chief executive officer of Vertex. “The collaboration announced today underscores our commitment to CF and accelerates our efforts to develop new medicines as quickly as possible for people with the most common type of this disease.”

With the Foundation’s expanded support, Vertex plans to begin a Phase 2 study of VX-661 by the end of 2011 and expects to enroll people with CF who have the Delta F508 mutation.

A Phase 2 clinical trial is underway to test combinations of VX-770 and VX-809 in individuals with two copies of Delta F508 mutation. Data from the first part of this trial is expected in the middle of 2011.

Read the Vertex Pharmaceuticals press release about the announcement.

Monday, April 4, 2011

Crossing paths with strangers

This weekend in Cincinnati was just beautiful. The weather was in the 60's and 70's on Saturday and Sunday. We were able to get some spring yard work done, and even got the front door and shutters on the first floor painted. We also had a family trip to the park on Sunday afternoon...which brings me to my reason for posting today...

So Sunday afternoon we load up the car with kids and diapers and sippy cups and snacks and wipes and hats and the wagon. We weren't going to the beach for the weekend, just the park for a half hour or so. The twins seemed content sitting in the wagon with their milk watching Ella run around with the dozen or so other kids climbing up ladders and flying down slides. About 20 minutes after we arrived, another family showed up with kids probably a few years older than ours and they began to play. As the parents got closer, I noticed that they were wearing a shirt proudly displaying the name of a Great Strides team. The only restriction that folks in the CF world have is that they're not supposed to be around others with CF because they can very easily pass the harmful bacteria that they carry in their lungs to one another. I don't even know if this family was a CF family or friends of a CF family or just happened upon the t-shirt or what, but I immediately worried that one of those kids had CF and would come to close to Drew. We walked away for a while and went to another part of the park, but Ella wanted to play on the slides so we went back. Martin suggested that we introduce ourselves to them, just in case one do those children did have CF, to protect both of our kids. I didn't want to do that. I just didn't want to make a big deal of it. I just wanted to stay away. I was worried that if we introduced ourselves and they didn't have CF that they would somehow be connected to CF and be sympathetic and want to come over and meet Drew and to be honest, I just am happier when people keep their distance from him. Better safe than sorry, right?

When we were at the CF event on Friday night, little Sarhea who has CF was dancing with everyone, letting people pick her up, giving hugs to perfect strangers (myself included) and just having an awesome time. I wish I was more like her mom and not so terribly paranoid about Drew catching something from someone. Maybe its different, with all of the other stuff Drew has going on making him slightly more susceptible to bacteria because of his inability to properly clear his airways, at least according to CF standards. And I do hope that as he gets older and learns to keep things out of his mouth that I will ease up a little and just really try to teach him to use sanitizer and wash his hands regularly. I don't want to keep him from doing anything, I really don't, but man do I worry.

The incident at the park (I shouldn't even call it an incident because nothing happened) got me thinking about the Great Strides walk. There will be dozens of kids there with CF. They ask that people with b.cepacia not attend because thats a potentially deadly bacteria that CF people can carry and very easily transmit to others with CF. But outside of having that, the only recommendation they make is that CF people stay at least 6 feet away from other CF people. Okay, not a total problem, unless you're 1 and love to play with other kids. I dunno, I just see it being totally stressful for me and frustrating for Drew when I don't want to take him out of the stroller and trying to keep anyone and everyone from touching him when he's the reason we're all there in the first place. This is the only CF event that includes lots of CF patients, because of the risks that patients pose to one another. I just don't know what to do. On one had, this is his day! All of these people are here supporting HIM! On the other hand, if he goes and he gets sick, that sucks. I can't keep him in a bubble, I know I can't, but I have to do everything I can to protect my baby.

I know people will have lots of opinions on this and half of me would love to hear them, in support either direction. On the other hand, you just can't possible get it unless you are in my shoes. I don't know what we will do. I had all intentions of bringing him with us to celebrate him on this day. Maybe I will just need some wine to ease the anxiety before the walk ;-)

Saturday, April 2, 2011

The Loves of My Life

I am so happy to have so many things in my life that I love. I mean really love. Three beautiful children, a loving husband, caring family, kind and generous friends. I also love capturing moments. Many of you may not know that I dabble in photography, and I love it. Photo sessions are some of my most favorite times. Getting to see new parents loving their baby. Watching siblings fight and parents worry that they won't get the moment that they were paying me for. First steps. Finger paints not on finger paint paper. I just love when people invite me into their homes to capture these moments for them.

Last night, we attended Cincinnati's Finest Finale benefiting the Cystic Fibrosis Foundation. I have to say that it was a pretty nice night out! The food was yummy and the company was enjoyable. I finally got to meet little Sarhea, a 3yr old little girl who has Cystic Fibrosis. Her mom works at Childrens and had introduced herself to Martin while we were in the NICU right after Drew was born. This little girl was so full of love and life, emceeing the nights events. She had the whole room smiling and crying all at the same time. I hope they find a cure for CF soon.

Most of these events include a silent auction, and while I was browsing last night I thought that I should start donating photo sessions to raise some money for the CF Foundation! So I'm going to do that. I'm also going to offer discounted photo sessions for the month of April and donate ALL OF THE PROCEEDS to the Cystic Fibrosis Foundation! For $100, you will get your photo session at the location of your choice (within reason of course) and all of your images on a disc to reprint wherever you'd like. I have a website - Check it out and shoot me a note if you're interested in scheduling a little something.