Team Cade goes national

On Saturday, May 19, 2012, Team Cade participated in 2 Great Strides walks. My cousin, Laine Sanders, and one of my oldest friends, Meredith Davis, started Team Cade's in their local chapters of the CFF. Meredith headed up a team in Alexandria, VA. Laine got us started in her local chapter in Houston, TX. Our family and some great friends went to Houston to walk there.

Team Cade in Houston

Nan and Ken Farrell

My wonderful cousin Laine!

Tucker and Cade are ready to roll!

Aunt Terry

Sawyer and McKinley were wore out!

Jamie, Laine, Nan and Ken

Cade is superexcited!

Poppy, Charlie and Aunt V

Charlie was excited too!

Meredith, Davis and Aaron West representing Team Cade in Virginia!

 What an amazing experience. Team Cade has only been to our local walk. This gave me and excellent excuse to see how other chapters run their walks and gave me a few new ideas!

We had such a great time! Unofficial total $908,000 raised (by the Houston chapter) for the foundation to help search for a cure!

Thanks again to everyone that came out to support us!

This is why we do what we do!

Roller coaster of a life

Life has been in a bit of a tail spin lately. At the end of February, Casey and I attended a Leadership Conference hosted by the Cystic Fibrosis Foundation in Bethesda, Maryland. It was a jam packed 2 days of all the great things coming into our world. We got to meet some amazing people. We were shown videos of children and adults that have begun taking the newest wonder drug Kalydeco. It was amazing to hear their stories of living "normal" lives after beginning it.

Kalydeco is a drug that is center at one type of class of mutations. Unfortunately for us, it is not one of the mutations Cade has. Only 4 % of the CF population has this type. This doesn't make it any less exciting. It is the first drug that is aimed at correcting the underlying cause of CF. It will most definitely be throwing doors open for new drugs to come.

So back to all these amazing people we met. First was Bob Beall.  He is the CEO and President of the Cystic Fibrosis Foundation (CFF). He has been there for the past 30 years. To me, this mean this is not just a job to this man. He truly loves these kids! He was such an inspiration to watch and hear. I think he may have been more excited than me about the new developments in the CF world (only slightly though). He has been one of  the leaders in paving the way to a cure.

The second greatest person to meet was Dr. Preston Cambell. Dr. Campbell is a pediatrician from John Hopkins. He presented a scientific update on the latest and greatest drugs coming into our life! This man put so much into perspective for us. He could explain the most technical of information to where anyone could understand! We basically learned that we they are still working on a cure for our kids. we can be hopeful that within the next 10 years a pill could be available to Cade that will control this awful disease.

We also met alot of great parents. I think this was the greatest part of the conference for me. CF is such a lonely disease. Not one that I would ever wish on anyone. But still it's very lonely. For parents as well as the children. Until you live something like CF, it's very hard to understand what everyday life is like. We are told as parents to keep our kids away from each other. This is to prevent the spread of germs (because they so often culture bacteria you don't want them to give it to each other). Therefore, parents are often kept separated from each other as well. Thanks to sites like Facebook and different blogs I have gotten to know some of these other mamas. But i finally got to meet a few at the conference. Now I have a personality to put with the face! To me, meeting someone jut makes them a little more real. It helps fill the gap when you get to meet other moms living your life.

 This is Breck Gamel. We grew up minutes apart from each other. We never met until we found out through mutual friends that our boys had CF. She is such a great momma and a huge inspiration for me!


One of the greatest things I heard at the conference was quoted by a Geico executive (Yes, Geico is a big contributor to the CFF). He said some one once asked him how he did so much with the CFF. His response was "I don't know how but I do know why". I will never forget those words. They are exactly how I feel each day. And until all of our kids have control of this disease, I know why I'll never stop either. 

Cade's first tuneup

Cade was admitted on Tuesday 3/37/12 for his first "tune up". A tune up is a 10-21 day course of antibiotics for CFers. Some CFers get 2-3 tune ups a year. Some can go years between. I'm hoping Cade falls into the last group. So far so good. It's been over 2 years without.
Cade's first day in the hospital was a little crazy. We got up super early and drove to Dallas. We sat in admitting for a while. Then it was finally time to come to his room! Once we made it into his room the real fun began. We saw the nurse, Dr. and respiratory therapist. Took a little while to go through Cade's history. Then it was on to xray.  After xray,  Cade got his IV placed.

                                                     Cade Showing off his IV for everyone!




At this point, blood was drawn and throat and nasal swabs were also collected. We were informed that Cade would not be allowed to leave his room until these cultures were back. This was to make sure he didn't have anything that he could pass onto the other children.

One day 2, we found out Cade was negative for RSV and FLU.  Now he can roam the halls. He does have to wear a mask so he doesn't spread germs to other kiddos.














He also can't go into common areas since he cultures MRSA.

 After all this fun stuff was done Cade got to try out the vest! We have been thinking of buying one. This let us see how he like it before we bought one! He did really well with it. The best part is, after we get one, his treatment times will be cut down to 45 minutes. And he can do the all by his self! The frees mommy and daddy up too!

 

 This made for one busy day and poor Cade was worn out by the end of it!

















I'll be updating as we go. Keep the prayers coming!

Love to all, Holly

I don't need no stinking feeding tube!

Last year at about this time we were faced with the possibility of a feeding tube. This is a tube placed into the stomach that you can give supplements through. A big part of CF if nutrition. Most CFers are pancreatic insufficient.This means their body doesn't have the enzymes needed to digest food. So they don't absorb the food they eat. This means they don't gain weight easily. We give enzymes with most of the food Cade eats. But even that only gets him about 75% absorption. Right now he is taking 5 capsules with every meal and 3-4 with snacks. He usually eats 3 meals and 2 snacks daily. A healthy weight is very important. Lung function and weight are very closely linked. So the healthier the weight, the better the lung function.
So back to this feeding tube. As determined as his team was that he needed this tube to help gain weight, I was just as determined he wasn't going to get one. We didn't want one more thing in Cade's life that made him different. Besides, he really likes to eat! So we started searching for ways to fatten up his food. We started him on a supplement similar to Pediasure. We add fat and protein to everything we can. Think macaroni and cheese with heavy cream and butter. Yummy! We also have a special powder we add to soft foods that is basically calories in a can.We've also discovered Hershey's chocolate Milkshakes. I am slightly jealous of the foods my kid gets to eat!
Well, after a year of fattening this baby up, we are finally seeing results. This little love has some has some thighs!!! Even got some chunky cheeks! I am one excited momma! We went back to clinic today. They were pretty excited too! Cade is in the 83% for his height:weight ratio. They prefer CFers to be above 50%.  I've stressed alot over Cade's weight. I can definitely say it's been worth it. There's still a long road ahead, but at least it's starting to look a little smoother!

Oh to be a CF mommy

I've often tried to think of ways to explain what it feels like having a child with something "different". It's not like I would change Cade. I love every fiber of this precious little boy. But sometimes it's hard not to think about the what ifs or to long for the normal things others so easily take for granted.
I think it's easier in some ways that my 1st child was born with CF. I don't really know any difference. I also feel very lucky that Cade was diagnosed so early because he will never know any different either. But still there are those times........
Today I was searching around a CF mommy site when I found the following post. I think it's  pretty great way to sum it up!

"I am often asked to describe the experience of raising a child with special needs to try and help people who have not shared that unique experience to understand it, to imagine how it would feel. it's like...

When you're going to have a baby, It's like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. Michelangelo's David. The Gondolas in Venice, You may learn more handy phrases in Italian. Its all very exciting!

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The flight attendant comes in and says, "welcome to Holland."

"Holland?" you say. "What do you mean, Holland? I signed up for Italy. All my life I've dreamed of going to Italy" But there's been a change in the flight plan. they've landed in Holland and you must stay. The important thing is that they haven't taken you to a horrible, disgusting filthy place, full of pestilence, famine, and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you must meet a whole new group of people you would never have met. Its just a different place. A slower pace than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "yes, That's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."

--Author unknown

Hope is here!

Today the FDA approved the first drug that "fixes" a defective CF gene!!!!! While this drug won't be of help to Cade because he doesn't have the mutation it works on, I am beyond excited! It does help my other favorite CFer Tori and this makes my heart smile just as much. I can't wait until the prescription is in her hand. Kalydeco is like the greatest gift to the CF community in a long time! Not only is Kalydeco a major treatment breakthrough for people with the G551D mutation of CF, the science behind the drug has opened exciting new doors to research and development that may eventually lead to a cure for all people living with CF.

For everyone that has donated to Team Cade and the CFF, this is what your money is going towards. The CFF has several more drugs that they are working on now. My dreams are coming true.  A cure is coming and no one else will have to watch their children die because of this awful disease.

Welcome to our life!

Welcome to our life.I guess I should start our blog with a little background info.
Casey and I were married in 2005. I am a nurse and he is self employed. For the better part of the past 9 years, I have been a pediatric nurse. We had tried for several years to have a baby. Finally our prayers had been answered. In 2009,we had Cade. Cade just happened to be born with Cystic Fibrosis.

 New baby + chronic disease = roller coaster ride with terrified parents.

CF is a genetic disease affecting the lungs and digestive system. Basically their "salt channels" don't work.If you remember from that Jr. High science class,salt follows water. In Cf salt can't get into cells for several reasons. Therefore water doesn't enter into the cells either. This leads to sticky mucous that clogs the lungs and GI tract leading to respiratory illnes and digestive issues. There is no cure YET. The life expectency of a child with CF is 39.
The past 2 years have definitely been an experience. After lots of info, Dr. visits and online support groups,we are making our way through this crazy wonderful life. Cade has done very well. He was born with a meconium ileus (meconium blocked in the intestines) and required surgery the day after he was born. He spent 2 weeks in the NICU. He was hospitalized again at 7 weeks for pneumonia. He spent his first Thanksgiving in the hospital. Luckily he hasn't needed to be hospitalized since.

We spend a few hours each day making sure that we keep Cade as healthy as can be. He has treatments 2 times each day involving breathing treatments and CPT (this is a clapping technique used to loosen mucous in the lungs). Each treatment takes about an hour at a minimum. When he becomes sick, we increase to 3 a day. They don;t bother him...he even asks for them at times, especially when trying to get out of going to bed!
Cade is also on several medications. He has enzymes that he must take when he eats. These help digest his food. Not taking them causes tummy aches and the worst smelling poop ever! It also means he didn't absorb and fat or protein from what he just ate. Weight gain is a big issue. We fatten up everything we can by adding butter, oil and cream to it. We also use carnation instant breakfat and another type of powder to add calories. You think feeding teenage boys is expensive, try feeding a CFer!!!

I guess that sums up the beginningof our story. Hope you love watching Cade grow as much as we do!