A lot has been happening lately in the CF Community. Last month, the FDA approved a drug called Kalydeco, the first drug to address the underlying genetic defect of Cystic Fibrosis. To read more about that ground-breaking event, click here. Words cannot adequately express the excitement I felt reading that press release; I can only imagine the hope and joy that other CF parents have felt since then.
(I recently found this blog, which describes the science of CF and Kalydeco in great detail. This lady understands the mechanics a lot better than I do, and she believes that scientists have "solved the puzzle...now it is a matter of time and money to see it through to the market" - truly exciting.)
Caleb's most recent CF visit was last Tuesday. He is still looking good on all the growth charts, and his BMI is in the 75th percentile. His CF doctor talked about a new clinical trial that will begin this summer looking at the benefit of Kalydeco in people with at least one copy of the r117h mutation (Caleb has one). He also said he wouldn't be surprised if we are giving the drug to Caleb in another year or two.
I really could not believe what he was telling me. I was anticipating a much longer timeline. It seems very unreal that the "miracle drug" we've been waiting and praying for could be coming so soon.
I asked how the drug would affect our day-to-day lives. Of course, no one really knows yet. People are just now starting to use Kalydeco and it will be months, years before anyone can really speculate about it's long-term effects. Will we still do daily vest treatments? Probably. Will we still do Pulmozyme (inhaled treatment) at age five? Maybe. Will this make Caleb less susceptible to pseudamonas, etc? We certainly hope so. Will it slow down and even prevent lung damage? Almost certainly. The day-to-day may look the same, but it's the anticipated long-term gains that everyone is excited about. The Big Picture looks very promising.
The here-and-now, however, is a different story. We got the results of Caleb's throat culture today, and once again, he tested positive for pseudamonas. Not good for his overall lung health. It has been almost a year since we stopped TOBI treatments and we are not looking forward to reintroducing them to a now very strong, very stubborn two year old. These treatments add thirty minutes to our morning routine, and thirty minutes to our bedtime routine. Please don't misunderstand, I am grateful that a medication exists to eradicate pseudamonas. I am thankful for the 10 months Caleb apparently went without it's destructive presence. But I am weary to my soul just thinking about the struggle that we are about to begin. I can't help but sometimes wonder why we have this cross to bear.
And that got me thinking about the Big Picture. In the coming days I will literally fight with my child to complete these treatments. I will no doubt have to hold him down, kicking and screaming, while I attempt to keep a mask on his face and pseudamonas-killing antibiotics flowing into his lungs. He will not understand why I am holding him, hurting him. He will struggle against me and he will be mad at me. And he will not realize that even though it hurts me to hurt him, it is all for his benefit.
Isn't it the same with our Heavenly Father? We struggle and fight and resist and turn away from him. We rail against him and insist that he doesn't care about us because our lives are not easy and comfortable. We ask why innocent children must suffer and get no discernable answers. But God has the Big Picture, the Eternal Picture. Everything that happens can and does ultimately fulfill His purposes. He never said our lives would be easy. He DID promise to always be with us, fighting alongside us, carrying us when our own strength is gone. And even in the midst of a storm, we can find peace.
As I struggle with my son in the coming month, heart-sick at the suffering I am causing him, I hope he knows on some level that I only do it because I love him. And I hope I remember how much God loves me, even when I lack the perspective to thank him for these trying days.
Gunnar Esiason posted a blog on the topic of social media privacy last year and it has me rethinking the level of detail I include in ...
Here we go again. PLEASE add your voice to mine and help us defeat this mockery of a solution to our national healthcare problems. Follow th...
Y'all. I can't even. Healthcare reform is slowly killing me. Half the time I can't bring myself to turn on the news and half the...