Still going

We still go to Philly every quarter to get more of the trial drug. In order to do so, he still has to undergo various testing each time. Even though I still don't like it, it is getting easier because we all know what to expect.

And now we have matching 3DS' so we can play Mario together. It's so cool actually. He's usually Mario and I'm Luigi, but the 3DSs talk to each other so we are playing the same levels together. Usually, I have to protect him from things and he steals all my Racoon Leaves, but he will share with me too. We also love to play Kirby together. He's really getting good at all the platformers, and it will be a strange day when he's better than me, and I think that day is not too far off... (but it will be awhile, I mean I have 30 years into Nintendo skills over him, lol).

So, with the follow-on trial, we'll be able to keep getting the drug until the FDA approves it at which point we can get a prescription and have it delivered like a regular medicine. It gives me a bit of anxiety to think about something so important and expensive just sitting out on our front porch delivered until we get home, but what can you do.

The Cystic Fibrosis Foundation does a really successful thing called Venture Philanthropy. They take the money raised and directly get it in the hands of companies to develop drugs and other methods to fight Cystic Fibrosis. There are many other things in the pipeline that could be available to Fawkes as he gets older. The more CFTR function we can get him, the lower sweat chloride level we can achieve, the better chance he has to avoid things like Cystic Fibrosis Related Diabetes, double lung transplant, and early mortality.

I honestly cannot be very optimistic for his pancreas. It's been 5 years of scarring and cysts, I really don't think he'll ever have that function on his own. I just hope that someday he can get a pump for enzymes (similar to a diabetics insulin pump) so he doesn't have to take pills everytime he eats, but we'll see. 

I'm really not the type of person that likes to ask for help, but I can't cure my baby's disease on my own. I really need the foundation and medical companies to do what they do best and research and find ways to alter CFTR function at the cellular level.


Thanks for reading everything and remember to Donate to add more tomorrows for my son, Fawkes.