This is such huge news. Today marks a momentous change in the way we view treatment for CF. The first drug ever to target the underlying problem in CF has been approved by the FDA. And while it doesn't address our specific type of mutation, it gives enormous hope as a similar drug is in the works.
FDA Approves Kalydeco (VX-770) — First Drug That Targets the Underlying Cause of CF - CFF
Tuesday, January 31, 2012
Monday, January 23, 2012
One box down, One to go
A week into Cayden's pseudo treatment we got word from the clinic that Trinity had also cultured for pseudo.
TOBI® (Tobramycin Inhalation Solution, USP) is a prescription inhaled medication for cystic fibrosis patients whose lungs contain bacteria called Pseudomonas aeruginosa. For the purpose of this blog post we will refer to it as PA.TOBI is given in 28 day cycles especially for people on it chronically. 28 days off and 28 days on. At the end of 28 days they will be re cultured. If they do not grow PA we will stop TOBI. If they continue to grow we will most likely repeat and possibly change to Colistin at some point. Many will never get rid of PA, but the important thing is to minimize damage to the lung tissue.
Between the ages of 6 and 10, about 40% of patients with cystic fibrosis have Pseudomonas aeruginosa infections
By the age of 17, nearly 60% of people with cystic fibrosis have Pseudomonas aeruginosa infections in their lungs
Up to 80% of adults with cystic fibrosis between the ages of 25 and 34 have Pseudomonas aeruginosa infections
To learn more about taking TOBI you can visit TOBI's OFFICIAL WEBSITE
Each of the kids is on a 28 day cycle and each treatment takes about 20 minutes. We start each day as close to 6 am as possible. With antibiotic nebs we have to start with chest therapy (30 minutes) followed by TOBI (20 minutes). We try to accomplish all this before 7 am so we have enough time for breakfast and getting dressed for school.
I have to admit as little of fun it is for our kids, I hate it even more. We have lost 2 hours of our day and I for one am not a morning person. TOBI is super sticky which clogs our nebs so by the time we get everything working properly we're looking at another 15-30 minutes a day. In the words of our favorite bedtime story "Where the Wild Things Are" PA "roars its terrible roar and nashes its terrible teeth!"
As much as we hate TOBI we have to be thankful for it, because not too long again CF patients who cultured PA were not given much longer to live. The fact of the matter is that when CF patients do not treat Pseudomonas aeruginosa, lung function declines about 2% a year. That could be about a 10% loss every 5 years.
Fortunately neither Cayden or Trinity are symptomatic at this point, but it is still creeping its way into their lungs. As adults they will most likely always culture PA, but while we can do something before the damage is done we will.
It seems like everyone we know lately with CF has cultured PA. It's interesting to see the spurt of something like this so widespread in just our circle of the CF community. One of which is little Maddie a friend we have met via social network sites like Facebook and Cystic Life. Maddie is 3 and has had pseudo for an entire year. She is now hospitalized for 10 days and luckily her bronch came out with great results---PA is in her throat but not in her lungs. You can follow Sandy, Maddie's mom's blog at Mommy for Madeline.
Fingers crossed this will kick it...we have 2 weeks left to see the verdict!
Saturday, January 7, 2012
The Trip of a Lifetime
Alright, you're going to need a big cup of coffee for this post. I have so much to share with you from our trip to Disney. Where to start...Wow! That's really all I can say about Cayden's Make-a-Wish trip. It was an absolutely magical week for our entire family and it was so hard to leave Give Kids the World (the village we stayed at). Chris and I both cried as we left for the last time. But we will always have a piece of our hearts there!
I'll try my very best to capture all this trip meant to our family and the highlights of each day. We are so grateful to our wish granters for the trip of a lifetime. Each day Cayden and I sat down to journal about our day's activities so we wouldn't miss an ounce of the memories we had just created.
For starters, let me share a little bit about Give Kids the World (GKTW). To be quite honest I would like to wish for a week at this place alone. Forget Disney, Hollywood Studios, Seaworld, Epcot and the like. This place is magic in and of itself. We could have stayed at the village all week long and never been disappointed.
Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need. Since 1986, Give Kids The World has hosted more than 107,000 families from all 50 states and more than 70 countries. Give Kids the World was founded by Henri Landwirth, a Belgian Holocaust survivor who spent 5 years in Auschwitz and Matthausen concentration camps. Landwirth immigrated to the United States, where he studied hotel management. While operating a hotel in the Orlando area, he became passionate about helping sick children fulfill their dream of a family vacation.
This place was unreal! Ice cream was available all day with no limits. Their slogan at GKTW is "Ice Cream for Breakfast." No joke, the Ice Cream Palace opens before the Gingerbread House where you are served breakfast.
The Village operates with over 1500 volunteers each week (yes, you read the 2 zeros correct) and only 120 year round staff members. The "angels" as they call them are all there for one reason: to serve your family. The most amazing thing is to know that the other 200 families there are also there for the same reason, because they too care for a child with life-limiting illness. Each time you come back back the attendant at the gate says "Welcome Home." It is truly our home away from home now and will always have a special place in our hearts.
Ok, back to the trip.
Monday morning, the day after Christmas our limo arrived @ 4:30 am. The kids were estatic! Colin said "Hey mom, look at the fancy car! The president is walking up to our door!"
Mommy was so caught up in the magic that she forgot everyone's meds in the fridge so we had to turn around 10 minutes on the way. That could have really been a damper in our trip.
At the airport Cayden was greeted by Jay from GKTW! When do you ever got a personal escort?!?
Every Monday GKTW celebrates Halloween and the main street was decorated in pumpkins, spiders, and costume-making stations.
Tuesday was our most and least favorite day all rolled into one!
The morning began with the football teams from FSU and Notre Dame stopping by to visit GKTW and sign autographs, play and hand out ice cream.
Cayden loved hula-hooping with all the players.
Both teams warmed our hearts. Thank you for making the stop to make our day brighter :)
The kids were really excited for Magic Kingdom so we headed there next. For those of you who have been do Magic Kingdom before, you know the time it takes to a) park, b) get on the tram, and c) cross over with either the ferry or monorail. For those of you who don't, I think you get the picture. It takes a while. Just after we had gotten to Magic Kingdom and watched the Castle show it poured! We got so wet that we decided to head back and take the 45 minute trip back to where we had just come from. Here's our picture to remember fondly our most soggy moment:
Colin even took a picture with his 1st charcter! We were so worried about how he would do with his fear but he was so brave and really overcame it this week!
Wednesday the REAL Santa came to visit the Village. He was vacationing for the month in FL. I say real because the boys asked Santa if he was real and he said "Sure I am." But they investigated even more about his beard and if he was the REAL Santa his beard wouldn't move if they pulled it. Santa gave them the nod, they pulled his beard and well, it was REAL! They were in heaven.
Wednesday was full of horseback riding, SeaWorld, and a Pirate Dinner Adventure.
Feeding the dolphins was such a cool experience. Definitely my favorite part of the trip!
Thursday we met Minne and Mickey Mouse. It was so great that each day our village had different characters visit from the theme parks.
Our next adventure took us flying high. We got an air tour thanks to Mauiva Air tours and the boys both got to fly the plane. Colin and I got special permission to fly over Magic Kingdom since it is a no-fly zone!
The rest of our day we spent at GKTW and getting some very important things done!
The Castle of Miracles is home to over 86,000 stars of hope representing all the children and their families who have visited the village. Cayden got an exact replica to keep at our house to remind him of the magic and love he experienced on his wish trip.
We can always go back and visit to see his star using a special passport.
Friday we headed back to the [dreaded] MAGIC Kingdom. We say dreaded because lines had grown to over 2 hour waits for rides and the crowds were unbearable. Cayden's wish pin was amazing getting us to the front of lines as fast as possible. Cayden's favorite ride was Space Mountain. We met a ton of characters, but Trinity's favorite was Rapunzel!
After Disney we headed to Medieval Times. The kids loved eating with their hands (except for Colin)!
Saturday was our last full day in FL so we took in Hollywood Studios and met our beloved Toy Story, Phineas and Ferb, and Cars Characters! After lunch we met up with the Loof family from Jefferson to spend time swimming at their condo. The excitement got a little bit crazier with Cooper hitting his head, a trip to the ER and 6 stitches! We got home just in time to ring in the eastern New Year's!
As we packed up to leave we were in tears. Cayden was especially heartbroken to leave his balloon behind, but decided to leave his balloon he had bought in the lobby at GKTW for other kiddos to enjoy. It was so sad for him to say goodbye but it would have been too crazy to fly on a plane with his balloon!
Each day when we returned the wish fairy had left presents for each of the kids on our kitchen table. They go above and beyond with all the gifts. It was most special because for the first time Colin wasn't left out and not including because he isn't like his other siblings. For the entire week he was given the most special love and wasn't told no. That was what made our stay at GKTW so unique.
Thank you for letting us share our trip with you. It will be forever in our hearts and we will never forget the most magical week of our life. Thank you GKTW and Make a Wish! We will always have a special place in our hearts for you. Until the next time we get to hear "Welcome Home..." thank you for making it such a memorable trip!
I'll try my very best to capture all this trip meant to our family and the highlights of each day. We are so grateful to our wish granters for the trip of a lifetime. Each day Cayden and I sat down to journal about our day's activities so we wouldn't miss an ounce of the memories we had just created.
For starters, let me share a little bit about Give Kids the World (GKTW). To be quite honest I would like to wish for a week at this place alone. Forget Disney, Hollywood Studios, Seaworld, Epcot and the like. This place is magic in and of itself. We could have stayed at the village all week long and never been disappointed.
Give Kids The World is a non-profit organization that exists only to fulfill the wishes of all children with life-threatening illnesses and their families from around the world to experience a memorable, joyful, cost-free visit to the Central Florida attractions, and to enjoy the magic of Give Kids The World Village for as long as there is a need. Since 1986, Give Kids The World has hosted more than 107,000 families from all 50 states and more than 70 countries. Give Kids the World was founded by Henri Landwirth, a Belgian Holocaust survivor who spent 5 years in Auschwitz and Matthausen concentration camps. Landwirth immigrated to the United States, where he studied hotel management. While operating a hotel in the Orlando area, he became passionate about helping sick children fulfill their dream of a family vacation.
This place was unreal! Ice cream was available all day with no limits. Their slogan at GKTW is "Ice Cream for Breakfast." No joke, the Ice Cream Palace opens before the Gingerbread House where you are served breakfast.
The Village operates with over 1500 volunteers each week (yes, you read the 2 zeros correct) and only 120 year round staff members. The "angels" as they call them are all there for one reason: to serve your family. The most amazing thing is to know that the other 200 families there are also there for the same reason, because they too care for a child with life-limiting illness. Each time you come back back the attendant at the gate says "Welcome Home." It is truly our home away from home now and will always have a special place in our hearts.
Ok, back to the trip.
Monday morning, the day after Christmas our limo arrived @ 4:30 am. The kids were estatic! Colin said "Hey mom, look at the fancy car! The president is walking up to our door!"
Mommy was so caught up in the magic that she forgot everyone's meds in the fridge so we had to turn around 10 minutes on the way. That could have really been a damper in our trip.
At the airport Cayden was greeted by Jay from GKTW! When do you ever got a personal escort?!?
Every Monday GKTW celebrates Halloween and the main street was decorated in pumpkins, spiders, and costume-making stations.
Tuesday was our most and least favorite day all rolled into one!
The morning began with the football teams from FSU and Notre Dame stopping by to visit GKTW and sign autographs, play and hand out ice cream.
Cayden loved hula-hooping with all the players.
Both teams warmed our hearts. Thank you for making the stop to make our day brighter :)
The kids were really excited for Magic Kingdom so we headed there next. For those of you who have been do Magic Kingdom before, you know the time it takes to a) park, b) get on the tram, and c) cross over with either the ferry or monorail. For those of you who don't, I think you get the picture. It takes a while. Just after we had gotten to Magic Kingdom and watched the Castle show it poured! We got so wet that we decided to head back and take the 45 minute trip back to where we had just come from. Here's our picture to remember fondly our most soggy moment:
Colin even took a picture with his 1st charcter! We were so worried about how he would do with his fear but he was so brave and really overcame it this week!
Wednesday the REAL Santa came to visit the Village. He was vacationing for the month in FL. I say real because the boys asked Santa if he was real and he said "Sure I am." But they investigated even more about his beard and if he was the REAL Santa his beard wouldn't move if they pulled it. Santa gave them the nod, they pulled his beard and well, it was REAL! They were in heaven.
Wednesday was full of horseback riding, SeaWorld, and a Pirate Dinner Adventure.
Feeding the dolphins was such a cool experience. Definitely my favorite part of the trip!
Thursday we met Minne and Mickey Mouse. It was so great that each day our village had different characters visit from the theme parks.
Our next adventure took us flying high. We got an air tour thanks to Mauiva Air tours and the boys both got to fly the plane. Colin and I got special permission to fly over Magic Kingdom since it is a no-fly zone!
The rest of our day we spent at GKTW and getting some very important things done!
The Castle of Miracles is home to over 86,000 stars of hope representing all the children and their families who have visited the village. Cayden got an exact replica to keep at our house to remind him of the magic and love he experienced on his wish trip.
We can always go back and visit to see his star using a special passport.
Friday we headed back to the [dreaded] MAGIC Kingdom. We say dreaded because lines had grown to over 2 hour waits for rides and the crowds were unbearable. Cayden's wish pin was amazing getting us to the front of lines as fast as possible. Cayden's favorite ride was Space Mountain. We met a ton of characters, but Trinity's favorite was Rapunzel!
After Disney we headed to Medieval Times. The kids loved eating with their hands (except for Colin)!
Saturday was our last full day in FL so we took in Hollywood Studios and met our beloved Toy Story, Phineas and Ferb, and Cars Characters! After lunch we met up with the Loof family from Jefferson to spend time swimming at their condo. The excitement got a little bit crazier with Cooper hitting his head, a trip to the ER and 6 stitches! We got home just in time to ring in the eastern New Year's!
As we packed up to leave we were in tears. Cayden was especially heartbroken to leave his balloon behind, but decided to leave his balloon he had bought in the lobby at GKTW for other kiddos to enjoy. It was so sad for him to say goodbye but it would have been too crazy to fly on a plane with his balloon!
Each day when we returned the wish fairy had left presents for each of the kids on our kitchen table. They go above and beyond with all the gifts. It was most special because for the first time Colin wasn't left out and not including because he isn't like his other siblings. For the entire week he was given the most special love and wasn't told no. That was what made our stay at GKTW so unique.
Thank you for letting us share our trip with you. It will be forever in our hearts and we will never forget the most magical week of our life. Thank you GKTW and Make a Wish! We will always have a special place in our hearts for you. Until the next time we get to hear "Welcome Home..." thank you for making it such a memorable trip!
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