Wednesday, October 20, 2010

what's really going on?

Inspection of the new house went off without a hitch. The house is so new that there is not much that they could find wrong.....little stuff like the hardwood was mopped with water by the previous owners and a light fixture in the bathroom.....

I have a meeting with my mortgage broker today. Instead of getting dressed, I'm sitting here "talking" to you.

I miss my world before June 30th. Im not even going to lie about it. Yes, it was mediocre at best. No, there was not much "living" to the life, but at least it was stable, predictable. I miss my miserable predictable life.

Everyday holds something new to deal with. For those of you who know anything about astrology, I am a cancer. My favorite thing to do is to retreat into my shell and hide when things get tough.....I have nowhere to hide and I MUST deal with everything that is going on right now. Its uncomfortable, to say the least.

Natalie's cough is relentless. Im starting to think that I should get a new doctor, a second opinion, a new CF center? Im not all about doctor hopping, but I just dont know if they are being aggressive enough. Or maybe its just me, I dont know.

Vertex announced the begining of their combination trial of VX770 and VX809. I am super excited about this. We are so close to drugs that could make a real difference. For those of you who are not schooled on these drugs, it would be the equivalent of insulin to diabetics. You can click on the Vertex link on the side of my page-------> over there--------> to see their progress or you can visit to see the press release. Vertex is anticipating filing a new drug application in the 2nd half of 2011 for VX770....

Dear God, please carry us through until you see fit for a cure to be found, amen.


  1. I agree with you about the dangers of doctor hopping. You have to be careful. However, getting a second opinion is crucial to success with this disease. When I tested Cayston, I had to go to a children's hospital. There were five or six doctors there and each had a different opinion about treating this disease. And according to the team at my clinic, some were not doing everything the science and research showed would help children. Information is power. Another resource for you is Start asking other parents what the protocol is for their clinics. You don't even have to buy a plane ticket or drive to find out. :-) Sorry if I sound preachy. I care a great deal about you and your girls and wish nothing but the best for all of you. Especially you, crabby cancer. :-) You need some some more of that life with jack handy show. However, you're entitled. You have your hands full being a mom. Sounds like the house is really nice and will work out. That will help when that's all finished.

    Best to you. Good vibes from CA, the state that is broke.

  2. I just want to be doing everything I can, and I just dont feel like I am. They say they dont start HTS until they are 6. I had to ask to increase her pulmozyme to q day instead of qo day, Ive increased her vest treatment times to 30 minutes on my own because it takes at least 30 minutes to evoke a cough and actually loosen dont sound preachy, its good advice, and a swift kick in the rear right when i need it, as always ;)Cant wait for the house. no carpet. its going to have the best air filters and a filter just for her at her bedside.....i have big plans and you're right, it will help, a lot..... :)love to you from LA, the home of ridiculous disasters :) ~j