We had a great spring break, featuring a nice visit with Grandma and Grandpa. We mainly just hung around the house, doing all the usual fun things--reading, coloring, playing with cars, and gallivanting around in the newly hospitable outdoors. I did not quite manage to get Lemon to the hospital to have his blood drawn, mainly because we were having too much fun and it seemed a shame to spoil part of a day with that kind of errand. And of course, by the end of the week, when I would have considered it, he suddenly started coughing a lot, which meant it wouldn't be a good time to draw blood anyhow. I still don't know exactly what that was, but it appears to have been intense but brief, in that whatever it is seems to be waning. We are not yet back to baseline, but quite a bit closer than we were on Friday or Saturday.
The arrival of spring means that Great Strides fundraising season is once again upon us. All of you have been so generous in your support of the CF Foundation in years past, and I hope we can count on your support again this year. As we count down to our Great Strides Walk (Saturday May 18 here in Madison, who's joining us?!?!), I thought I would share with you a few of the important things that the CF Foundation is working on that would benefit from your support.
Today, let's talk about the Infection Research Initiative--you can read more about it on the CF Foundation website
here. In October, the CF Foundation announced plans to spend $100 million over the next 5 years on a comprehensive research program dedicated to understanding lung infections in CF, and finding better ways to treat them. Infections are the number one reason for lung function decline in people with CF. We urgently need better ways to quickly identify the organisms that are responsible for infections, and we need to understand the best ways to use antibiotics, antifungals, and other medications in order to eradicate an infection once it starts. These are issues that are very personal to our family, and have been a source of frustration and concern since Lemon was born. We always want to know what is causing his respiratory symptoms. We always want to use an antibiotic in the most prudent way--only when it is necessary, only when it will do some good, and only as much as we need to use to cure the infection but not more.
With the current state-of-the-art, we are still flying blind on all these points. When he gets sick, our metric for whether to start an antibiotic treatment is to consider whether, in our opinion, he seems sick enough that we should try it. Our approach for deciding which antibiotic to use is "whichever one seemed to work last time." We decide how long to treat by seeing how long it takes him to get back towards respiratory baseline, and then continue treating until we reach 10, 14, or 21 days of treatment, whichever comes soonest. It's hardly a rational or scientific approach, and we never know what it is that we're trying to kill. We have been lucky that this approach has kept us out of the hospital for the past couple of years, but it is virtually assured that our luck will run out at some point. Which is why we need to do more research so that we can stop relying on luck and guesswork, and actually have a scientific basis for our treatment decisions.
I hope that the Infection Research Initiative sounds as exciting to you as it does to me. If it does, please consider heading on over to our team fundraising page (
just click right here!) and making a donation of whatever size suits you--this is a team effort and every dollar will help in the quest to give Lemon and his fellow CFer's long, healthy, happy lives. Thank you!
I hope that the Infection Research Initiative sounds as exciting to you as it does to me. If it does, please consider heading on over to our team fundraising page (just click right here!) and making a donation of whatever size suits you--this is a team effort and every dollar will help in the quest to give Lemon and his fellow CFer's long, healthy, happy lives. Thank you!
