Tuesday, May 12, 2015

"No concerning results found"


This was the heading of the results from one of the many tests Meagan had to undergo to check if she had any lung infections.

My immediate response was, "Concerning for whom?"

While it was true that the tests had not detected any new virulent infections, it did show the same infections we have been dealing with and trying to get rid of for the past several years.
Such is the roller coaster of a Cystic Fibrosis parent.  The good news that there is no new reason for concern is mixed with the baseline concern that is always with us.

This drama plays out in a number of ways.

I delight in the wonderful young woman that Meagan is becoming. My heart leaps as I see her enjoying dancing, music, basketball, and her school activities. I am excited to see her learning to be a friend to her classmates and her big sister. I am proud of her accomplishments at school and academic competitions. I am releived to see her taking greater ownership of her treatments and care.

But there is also worry. Why is she so tired some nights? Why does she wake up so early in the morning hungry? Can we let her do this additional activity, or is it not worth the risk? Is she coughing more than she was before? Did I forget a treatment, or needlessly expose her to more risk? Are we striking the right balance between taking this seriously and not letting it run our lives?

This same mix plays out on our hopes for a cure for CF.

There are exciting developments (http://www.thestreet.com/story/13146202/1/vertex-pharma-cystic-fibrosis-fda-advisory-panel-live-blog.html), that have already improved the lives of many CF patients.
But then there are questions. What will happen when this gets out to a wider group? Will insurance companies pay for it? How will we afford it? What don't we know yet?

And so, we come to another Great Strides walk for Cystic Fibrosis.  We are aware of the impact the disease has on Meagan, our family, and many other families.  We are saddened about those who have been taken away from us or made to suffer from this disease.

But we also celebrate. We celebrate the progress we have made toward a cure. We celebrate the people who have supported us and Meagan through the years -- by walking with us, donating to events like this, your assistance and forebearance with our practical needs, and your prayers and words of encouragement.
We are excited to be able to share this walk this year with my sister's family from North Carolina, with my family that will be walking the same day in Point Pleasant, New Jersey, and also sharing the walk day with St. Louis.

I hope you can find a way to join us, either by walking with us, offering your financial support, or your good wishes. 


Peace,
John McGuinness