Thursday, February 3, 2011

Not the best news I've heard all day

I don't know if I put on the blog that Drew was having another bronchoscopy or not. Regardless, he had one on Tuesday. The doctors thought that it looked as though his malacia had improved a little bit. His lungs still look "funny" but they are hopeful that with time they will grow and develop into normal looking lungs.

They did a culture of some mucus they got from way down in the lower airways and we just got a call today that he's growing Pseudomonas. UGH!!! Pseudomonas is a bacteria often found in the lungs of CF people. It thrives in the warm, damp environment that the mucus in the lungs of CF kids creates. Unlike staph, for example, its incredibly hard to get rid of. Its the #1 cause of decreased lung function in CF patients. Our doctors said that they treat Pseudomonas very aggressively in babies to attempt to eradicate it before it colonizes in the lungs. Drew will be on an oral antibiotics for 2 weeks and an inhaled antibiotic (Tobi) for 28 days. At the end of the 28 days they will re-culture his mucus to see if they got it. I think that patients are often put on a Tobi schedule of 28 days on, 28 days off, 28 days on. I'm not sure if that will be the case for us or not. I guess we'll see how this goes.

All of the past cultures done on Drew have only shown Staph, which I guess is what I was expecting. I use to say "only staph" with hesitation, as staph in the lungs doesn't sound like something good. But I learned that staph in the lungs of CF people is normal, and its not a problem unless its flaring up, at which point it can usually be treated with an oral antibiotic. I did not/do not want Pseudomonas in Drew's lungs.

I know I am beating a dead horse, but Cystic Fibrosis is not a federally funded disease. That means that the only research being done on new drugs and treatments to improve the quality of life for and cure this horrible disease is being funded by YOU AND ME! More now than ever I need your support. I've asked for help. I've opened my heart to you. And hearing today that Drew has Pseudomonas broke me down. The first new inhaled antibiotic to treat these chronic and resistant lung infections was discovered by research funded by YOU AND ME. There are two investigational studies currently going on that aim to correct the basic defect of CF - funded by none other than YOU AND ME. A total of eight promising CF therapies are currently in Phase 3 trials, the final stage of clinical testing. Any one of these therapies -- or a combination -- could have a profound impact on the lives of those with CF. None of these would be possible without your support and donations.

So I've put together a list of ways you can help. Here goes:
  • Spread the word!! Share Drew's video with just 5 people you know. Here's the link:
  • Donate to our Great Strides team by clicking HERE. If you can only spare $5, we will appreciate your $5. If you can spare $500, we will appreciate that too.
  • Sign up to walk with us in a city near you. Here is the link to a list of cities that Team Doin' It For Drew is walking in, as well as a link to find a walk in a city near you:
  • Ask your company if they are willing to support Cystic Fibrosis by offering matching gifts on donations, or by making a corporate donation. You never know how many people you can reach until you ask. The worst they can say is no.
  • Become an Advocate for CF. It takes but a moment of your time to send a pre-drafted letter to your congressman/woman, petitioning them to get federal support for Cystic Fibrosis. Imagine if we had government funding for research instead of just the money that I'm able to raise!! Click here to read more about becoming an advocate: BECOME AN ADVOCATE
  • Say a prayer for little Drew. He needs it. And if you have one to spare, I could probably use one too.


  1. As I just posted on Maureen's FB link to this site, Drew is positively CHERUBIC! God bless your whole family - you are brave and inspiring people. Your video of Drew is beautifully done and I will share it with as many people as I can. Best of luck in your fundraising and to all who are walking. I'm sorry for this latest update that wasn't what you would have liked to hear. I will keep you all in my prayers. xo - Deirdre