Today has been a day of emotion for me. Today is a day I am sure I will never forget. It is one of those days that will stay in my mind forever. Like the day my children were born. The day I said "yes" to my love. The day I found out Kaleb had CF.
Today was a ground breaking day in the word of CF. Today, the FDA approved a new drug called Kalydeco (also known as VX-770) for the treatment of cystic fibrosis in patients with the G551D mutation. This is not Kaleb's mutation. In fact, this mutation only represents 4% of the CF population. Kaleb has a Double Delta F508.
Kalydeco is a drug (the first of its kind) that actually targets and corrects the underlying defect that causes CF. In English, it opens up a chloride channel that is typically blocked in CF patients with a specific mutation. It has been called "a cure" but it won't cure the disease, instead it will correct the defect on a cellular level that will then allow that CF person to function very closely like someone who does not have CF. In the trials, people gained weight, gained lung function, and even were able to stop other medicines.
When I read this barrage of information that flooded the CF boards and my FB newsfeed, I was overwhelmed. I was so happy for those this will help, but at the same time, I was heartbroken it was not for my son.
When Kaleb was diagnosed we were told there was no cure and there would not be a cure in his lifetime. Now, for the first time, there is a chance. A chance, that in his lifetime we might, possibly, maybe could see something close to a cure. But I am so scared. So scared to hope.
I am not trying to be pessimistic. I really am not. I am so elated for those this can help and I know they are working on a combination drug that could possibly work for Kaleb. His mutation is more severe, more complicated. So, in turn, the drug they would need for his mutation would be more difficult to come up with. But I am scared to hope. Scared to allow something back in that I thought I would never see.
I have read several blog posts today that echo this feeling. This feeling of mixed emotions where we are watching people in our community have hope and see a future for their kids, for themselves. But inside we are racing. What if they don't find one for our kid in time?
Today we also found out that Kaleb has lost a significant amount of lung function. After two weeks of IV's and all this mess in the hospital where he is supposed to be getting better, his lungs, in fact, got worse. Worse. Kaleb has 49% lung function. Less than half. To give you a clearer picture. At 30% they go to lung transplant evaluation and in the 20% they are listed for transplant because there is nothing else they can do.
So today, in the world of CF there has been a breakthrough. And today in my world, I can feel him slipping away. What if this is permanent damage? What if he cannot recover? We are doing everything we can, every med, every treatment, every hospitalization, everything....and still he is losing lung function. What if they find that cure, if they find that combination of drugs that will help Kaleb, but it is too late? That, to me, is devastating. To be so close....
I apologize if this comes across negatively or pessimistic or even one who has a lack of faith. My feelings don't mean I trust God. This emotion does not mean I don't believe. My tears don't mean I am not happy for those this can help and my realism doesn't mean that I cannot also see the good things. I am just struggling right now. There is a door of hope I am standing at and it has been closed. I am afraid to open it and step through, I don't know if I can handle that door being shut in my face again.
And so I cry uncontrollably at the thought that we stand on the edge of a new reality. This emotion is too much. What is happening in the CF world, it seems unreal. It is hard to take in. The feeling I have as I wait to hear if they will find what they need for Kaleb's mutation is gut wretching. My stomach is in knots. And what is happening in my world is literally hurting my insides. To watch Kaleb breath with all of his might today and give everything he had and still, only 49%....what if it isn't in time?
My worlds of hope and devastation collide....
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