Wednesday, March 30


I had to decide this morning if I wanted to wait it out for the clinic to call me with results or did I just want to call and ask for them directly?

It was a  hard decision.

But it seemed worthwhile to calm my headache and try to find out the results sooner than later...

 All along I have been thinking it would be a really nice if Pseudo gave us just a little break this time. After two rounds of TOBI and Cipro....we were all hoping for the best and expecting the worst.

My husband and I had our bets. The chance that the Pseudo was still there = 75%. The chance that it was gone= 25%. Those numbers show exactly how we were expecting the worst. Of course, we were hoping for the best....

But, the best is not the kind of phone call we got.

The nurse called to let us know that Madeline is still culturing the nasty beast
pseudo. I had a hard time hearing this news, keeping in the tears, and just plain holding myself together.
But somehow, I did.

After a long talk with the nurse she explained that trying a 28 day supply of Cayston, another inhaled antibiotic that works very similar to TOBI was what the "Hopkins CF Team" thought would be best. (Check out Margaux's blog by clicking here to learn about Cayston. She does a fabulous job describing Cayston. We are both on a similiar journey...due to this nasty beast!)
Cayston was developed about a year ago and is a brand new antibiotic that works to treat Pseudo. It has not been tested for safety in children under the age of 6. But with any of these medications, you take your chances. As a mother of a CF child, I have to weighMadeline's risks. She has Pseudo in her lungs that could potentially be damaging her lung tissue....I would rather try a medication that can treat that then worry about it's effects.

We are hoping that Cayston may be the medication for Madeline. Some people do not respond well to TOBI and this may be Madeline's case. We will complete the 28 day supply, wait 2 weeks, return to clinic for another culture. We are starting to feel the "STABBING" nature of this war with pseudo. This is becoming too much of a routine...

Pseudo and routine should never be associated with each other. The reality is that we must get rid of Pseudo sooner than later. Once we have expired all of our options, we will be admitting Madeline for IV antibiotics for a 2 week period. We hope that other methods work but as of now this is our plan.

Today, our family is regrouping our thoughts, taking a deep breath, and hoping for a better day tomorrow.
We feel a little defeated but ,we know our fight isn't over.

Tomorrow we will start all over again in fighting this terrible beast. We will put our emotions aside and jump in yet again because the fight isn't over until Pseudo is gone or a cure is found.

 Please consider donating to the CF Foundation this month in Madeline's name. We need YOU.


  1. So sorry to hear this... keep your chin up. Madeline is grateful for you whether she can show it or not! I will pray that Cayston is the answer she needs. We just finished TOBI and are going in tomorrow... Lots of love headed your way.

  2. Hugs! We will keep you in our prayers!
    Meghan Carrigan

  3. Ugh, Sandy I didn't realize that you had gotten the results when I talked to you about Cayston. Hang in there, this is exactly what we went through with Ben. If it helps, I have had people email me telling me Cayston killed the pseudo when tobi didn't. I have high hopes for Cayston and our kids. I'm always thinking of you and glad I have someone to go through this with. I just wish we didn't even have to go through it at all. Ugh

  4. Ugh!!! SO BUMMED FOR YOU!! I know it's so frustrating. I'm so sorry for both you and Madeline. Hopefully this will kick it though. Bennett's doc is incredibly conservative. I don't think she'd even let us have Cayston until he was of age. She doesn't want him on Albuterol because she feels its not necessary until he gets sick...for now, she considers his lungs "healthy." So, we do albuterol PRN (as needed). But I am so following your story as I know it won't be long until it is ours. Wish I could come over and help! Thinking of you guys!

  5. Gutted for you guys.

    I wish pseudo would just leave our kids alone. I just hope for you guys and margaux that cayston can clear it this time. I don't want to read a post from any of you about coming to terms with it being there all the time like we had to.

    Keep us updated and I'm sending all I got that this will work.

    Take care xxxx

  6. I've been reading about your sweet girl and what she has endured. I am praying for her.


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