Friday, August 5, 2011

The Big Picture

It has been a tough couple of weeks…but I cannot be distracted from the big picture.  Brady had been having a hell of a time breathing and sleeping because of swollen, chronically infected tonsils and adenoids.   He had surgery to remove them on July 28th.  I know lots of people have had their tonsils removed, but I think it has been a little tougher for Brady.  He has to swallow a ton of pills every day, no matter how much his throat hurts.  His breathing treatments have definitely been a challenge also.  One inhaled treatment is concentrated salt water, and while probably very therapeutic, seems to burn quite a bit.  He has been complaining during his vest treatments too.  I suppose being shaken like crazy doesn’t do much to soothe raw surgical wounds.  I feel so bad.  CF just sucks.  It makes his life so much harder.  And my heart breaks when he sees me coming toward him with another handful of pills and he starts to cry.  Or when I am sitting next to him for his treatments and all I hear is a muffled, “mommy my throat hurts” from behind his nebulizer mask.  Fortunately, we are now over a week post-surgery and things should start getting a lot better soon.  That is worth repeating…Things should start getting a lot better soon.
The day Brady had his surgery; Vertex announced their plans to apply to the FDA with VX-770 in October, 2011.  This October.  Just a few months away.  And while I know there are a million variables that could affect the outcome, VX-770 does have fast-track status with the FDA.   Vertex Pharmaceuticals managed to get another one of their new drugs (Incivek for Hepatitis) approved earlier this year in less than 2 months!  Vertex was prepared and was able to make Incivek available to patients 3 days after the approval.  VX-770 has superstar clinical data with only a few minor adverse side effects reported.  Honestly, I think they are in a good position for a hasty approval.  I am trying so hard to think about this objectively.   I can’t even guess how many scenarios I’ve played out in my head concerning when and how Brady will get his drug.  My latest goes something like this(cue dreaming sounding background music)…Vertex submits their new drug application in October and is approved by the end of year.  2012 starts off with a bang and VX-770 drops from the sky with a little silken parachute into my hands.  I’m pretty sure the bottle will be encrusted with jewels.  I rub the bottle and a genie pops out.  He doesn’t even ask what my wish is, he just hands me the little blue pill.  At that point, I drop to my knees and give it to Brady(very dramatic, tears streaming down my face).  He swallows it and runs off to play, as if nothing ever happened.  But for Brock and I, there is a palpable shift in our universe at that very moment(I know, soooo cheesy right?  Big deal, it is my fantasy!) 
Back to reality, I’m so curious to know how I will feel right then.  I try to be thankful on a daily basis, but this is new.  This is something I would gladly give my life for.  It must feel awesome to receive a gift like that.  It is something I’ve dreamed about every day since his diagnosis.  I have never wanted anything more.  Never.  And now it is practically here.  It is happening.  There are still thousands of people with CF that won’t benefit from this right away so it seems like an even more personal miracle.  When I first read about Vertex’s research, Brady was an infant.  I dreamed up my first scenario that day.  As the years passed and further trial results were published, I obviously became more and more obsessed.  This couldn’t be better if I had scripted it myself.  Why the hell am I so lucky?  I have been trying to stay busy and focus on other things for my sanity.  Trying is the key word there.  My detox diet has been a nice distraction.  I want to look my best for all the television interviews I will be doing when Brady is all fixed up and the world wants to marvel at him ;)  I hope Brady’s pharmacy will agree to deliver via silken parachute(horse drawn carriage would be a second choice)…just this once!