3 years and counting

It's way past 3 years actually.  April 27, 2009 this started.  Now it's July 12, 2012.  His goal was to get to Madison's graduation from high school in 2011.  He did it.  Now we're looking at Chase's graduation from college next May 2013.  Amazing.  We're lucky, we're blessed, we're all still here!  Craig isn't one to sit around and wait.  He has something going every day.  Recently he has installed a sprinkling system at his mom's, in the process of fixing all the sprinklers in our yard, literally pulled tires off cars to get new ones, taken 3 of our cars and a motorcyle in for inspection, charged the a/c on Chase's car...it goes on and on.  The guy is busy.  Maybe he can only muster the energy to work on one project a day, but he's doing it.  The heat is tough, it saps everyone's energy.  Craig comes alive at night.  He's out in our yard at 2 am working on the sprinklers with a flashlight.  He likes the night, hates the morning so his schedule is a little off the rest of the families'.  Actually Maddie has been getting up at 5 am to go to her new CNA job at Primary Children's Hospital  and sometimes Craig is still awake!  The other night Chase was working on a short film and had been up late getting things set up and then got up early to go shoot and Craig thought he'd just come home!  Our house is never asleep for long.  Luckily Craig is comfortable sleeping in and I can go downstairs to work and it is relatively quiet until 12 or 1 pm when he wakes up.  A must for Craig is his silky blankets made of nylon tricot and the eye shield he made to block the light.  I need to take a picture of him asleep.  It's kind of cute.  We still feel grateful to Pfizer for Sutent.  It might have reached it's efficacy at this point.  Usually it works for about 21 months and we're at 22 months of taking it now.  He has some signs that it isn't working the same.  Flushing, increased diarrhea and more pain in the liver area.  We'll see the dr. next month and see what the next steps will be.  There is another drug RAD001 which might be on the market now which could be a possibility.  Craig really feels that it's all gravy now...

4 months later

Here we are 4 months later.  Not a lot has changed with Craig.  He is still plugging along and doing what he can and is up for each day.  He did have a scan in early May which was all good.  Things really haven't changed much and the Sutent is doing it's job as of May.  This month he is feeling a little less throw-uppy (if that's a word, not).  Diarrhea has increased more so that's not a good sign.  Progression of the disease is usually marked by increased diarrhea and flushing.  He has been flushing (turning red) every once in awhile.  His color is kind of strange.  He's very pale and even in the sun doesn't really burn or tan.  Sutent has an efficacy range of 21 months on average and that's exactly where we are in usage.  He started it in August 2010.

Craig has been installing sprinklers in his mom's lawn which is keeping him busy.  The leaning over and crunching his liver is uncomfortable.  He says he feels like that releases toxins into his body and he feels the effects for awhile that day.

Maddie made Craig eclairs for his birthday on June 1.

How time flies...

I can't believe it's been 3 months since I last posted. Sorry about that. No news is good news and that's the case here. Craig is doing well, still battling the eating and digesting of food every day but he's feeling fairly good and participating in life. His weight is still good and the tumors seem to be stable. His blood work at the doctor yesterday suggested anemia but that's to be expected with a chronic illness. Tumor markers are good: 6262. Even lower than last time. He'll have a scan at the next appointment in May.

The Sutent drug is still working as far as we can tell and we are so grateful to have it. We did receive good news last week that Pfizer has approved us for another year! Hurray! The drug is on the market now so we were afraid they might say to go through our insurance. The problem with that is our prescription deductible is $1000 and the maximum out-of-pocket is $4000 per year. With Sutent at $6000 per month, we'd get 1/2 of the first month paid and that's it. Sutent is seriously saving his life. It's not actually a chemo pill as I have suggested before but it does two things I've copied from the website:

SUTENT may slow or stop some cancers. It works by blocking 2 basic processes that cause tumors to grow and spread. These processes are called proliferation and angiogenesis.

Proliferation:
This is when a cell divides, creating 2 cells where there used to be only 1. Like the other cells in your body, cancer cells divide. The difference is that cancer cells divide more times than they should, forming a tumor. SUTENT may help slow down this process.


Angiogenesis:
This is when new blood vessels form. These new blood vessels give tumors the nutrients and oxygen they need to grow. SUTENT may help stop this process.

SUTENT may help stop proliferation and angiogenesis by blocking the signals that cause them. Without these 2 processes, tumors cannot grow.

Craig really is the poster child for Sutent. His results are fantastic and we just hope and pray they will continue to be that way for a long time.