Wednesday, April 6


It's been a busy few days learning the "ins and outs" of inhaled Cayston. Luckily, I have had Margaux's help in learning more. She started Cayston with her sweet little boy,  Ben a few weeks ago so it's been nice to have someone to talk to about this drug since it seems that not many CF Centers are dispensing Cayston to their patients under 7. We recently based our new move to the suburbs of DC just so we could attend one of the leading Cystic Fibrosis Centers and we couldn't be any happier that her clinic offering to do  alternative medications such as Cayston to help M battle Pseudo. John Hopkins has more than exceeded our expectations, and for this- we are so thankful.

Cayston arrived yesterday afternoon via the Fed Ex guy. I quickly opened it and let Madeline take a look at her medicine that she would be inhaling for the next 28 days. She was very intrigued by it. I am even more intrigued to see if it has the power to kill this nasty beast.

After 2 rounds of inhaled TOBI and Pseudo still lingering in her lungs, I had given up hope that TOBI was Madeline's lucky drug. I have heard from other adult Cfer's that TOBI just never worked for them and oftentimes it took Cayston to get their body to respond to the  Pseudo. I am trying to be very hopeful .But, I am reminded of what we are battling every time I open the refrigerator to see our "case" of Cayston taking up almost a whole refrigerator shelf. I find myself staring hard at these tiny vials wondering if this will be our "magic" drug.

Note the margarita mix below and the beers above?
They help me keep my sanity.  :)

After some crazed thoughts about TOBI and Cayston, I found myself stumbling on this article. It discusses how our "magic" drug may actually be what is taking up space in our fridge- Cayston. I do recognize that the
study was done by Gilead who are the manufacters of Cayston ....which makes your wonder if it's the study is totally believeable. I want to believe it.

Altera Neb with Cayston

I want to believe that Cayston will kill Madeline's psuedo. I want to believe that a cure is coming sooner than later. I want to believe that Madeline will live a long life. I want to believe all of this.

So Cayston your magic. Make me believe that all of these things are possible.

I want to be a believer.....


  1. yay for Cayston arrival!!! Isn't it so easy? and fast! I love it! Keep us updated and my fingers are crossed that this is IT for our kiddos!

  2. GL! Go Cayston, Go! Or as Miranda says now, "go, go, go!"

  3. yay for Cayston, let me know how it works. Zoey's doc shut me down when I asked about it, she does not use it for kids under 7. I will have to tell her your hospital is doing it. I think we are about 3 years behind.

  4. Excellent! Keep us updated on your pros and cons - very very interested,I am trying to persuade out team to let us use it! Madeline looks very cute in the pic!

  5. Beer - check. Margarita mix - check. Cayston, hopefully the magic maker for M - check. Prayers - check. I think y'all are set!! Hugs!!

  6. I was just thinking that I want a Fresca and vodka! Hope you all get the meds that you need!


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