Tuesday, May 3, 2011

The benefits of the patient registry

Tomorrow is the last day we will be waking up at 6am to administer IV antibiotics, and we couldn't be happier. We are so not morning people. I was blessed with 3 good sleepers, and our days typically begin around 8am and end, for the kids, by 8pm. Waking up at 6 for the past two weeks was not pleasant for anyone involved. That said, I'd take it over being in the hospital any day. We have a follow up appointment next Tuesday, and hopefully will get positive results. This past oral culture that showed the pseudomonas was the first positive throat swab we've seen. The pseudomonas was originally picked up with a bronchoscopy, so until we see a clean bronch I won't be convinced its gone for good. I hope though. I really really hope.

I got some great fundraising ideas from another CF mom whose blog I follow, and we've been raising TONS of money for CF. My team nationally is up over $12,500, and I am personally responsible for $8,000 of that. I have another $1400 not banked yet, and I know my parents have received over $2000 in checks from their friends. This weekend, friends are holding a Sicilian Buffet Dinner for our team, and at the end of May I'm having a garage sale with my neighbor (more to come on that). That will be our final 2011 fundraising event, and hopefully get us close to our $30,000 goal. Every little bit counts!

I've been on a number of national team conference calls and have gotten so many great ideas on fundraising and rallying support. This year I made a big push for the past 4 months and if I were my friends and family, I'd be annoyed with all of my requests and persistence. I make no apologies though, as my fundraising has been a huge success. This upcoming year I'm going to spread things out a bit more. It will all go toward our team and our goal, but it won't all be at once. I ask for you to bear with me. Don't hide me on Facebook. Instead, help me! Embrace my mission and my efforts. One day, soon I hope, you will all be able to say that you contributed to the cure. Your $5 or $500 helped to fund the research that will save Drew's life.

I met another mom today who contacted me through the blog and has a 5yr old son with CF. He also has the same mutations as Drew. That's two CF mom's that have reached out to me in the past month, looking to share their story. The CF Foundation, over the past 5 years or so, has worked to create a patient registry where information is collected and shared with the purpose of helping doctors identify similarities in patients with the same mutations and ultimately get a better understanding for and cure for this disease. Equally as important, in my humble opinion, is connecting patients or parents of patients with others who are going through the same thing, trying to understand and find similarities between their children who have these matching mutations but so so very different symptoms. There is no one on earth more motivated and diligent when it comes to finding answers to heal a sick child than concerned parent. We gave the power to the doctors and researchers when we signed the agreements to have Drew become a part of the patient registry. But I want the power. I would sift through that data every night trying to find something, anything, that might provide an insight. Since I know that ain't happenin', I'll do what I have to do to connect individually, one person at a time, with others who share Drew's mutations. I'll connect with others who don't share Drew's mutations. You can learn so much from other CFers - therapies that work or don't work for them, their airway clearance methods, different routines they have and suggestions for how to keep germs out and fat in.

Its almost 10 now, time for the last IV dose of the day. Tomorrow we can go back to "normal". Hopefully its a long time before we have to deal with any of this again!

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