Dave and Busters

While Shawn was in town earlier this week, we went to Dave and Busters to use up a few cards I had left over from a work event this past summer.  He played games, won tickets, and was able to purchase a few items as a memento of the day - a stuffed animal for Arie, a Dave & Busters glass, and the stuffed Hoosiers finger pictured here.  

Thanks Frazer for leaving me your card this summer.   As you can see it was put to good use!

It was nice to get lost in games and put aside heavier thoughts for a few hours.  

pretty pills

This is the type of conversation most of you will never have with your child. While we're in the car, Shawn remarked, "You know, my new pills are pretty - a nice shade of red. I think alpha blockers are much prettier than beta blockers, beta blockers are so boring. Actually, calcium channel blockers are pretty too, but not the beta blockers."

the search for a carcinoid is back on

Today was a long day - got to U of C at 12:30, CT scan at 1, lunch at Medici, then appointment with new endocrinologist at 3.  Didn't leave the endocrinologist's office till after 6.  He said he left us till last because he wanted to be able to spend more time with Shawn.  

First we saw an intern and a fellow; and I was wondering if we were going to see Dr. B. at all.  They spent about 45 minutes with Shawn, during which time he was having a fairly minor spell - bp 165, face red and warm.  They said you're obviously having a reaction to something but we don't know what; then said they would be back after talking to Dr. B.  A while later all three came in. Dr. B said "We've all been talking about you".   He said "I see that you've been to my friends at the Mayo Clinic," at which time I was thinking "another dead end."  

But his next words were less than kind about his opinion of their workup.  He said that all the symptoms, plus Shawn's reaction to all the different medicines he's been on, strongly points to a carcinoid.  Actually I think his exact words were "it's a carcinoid."   He said that if Shawn were being accused of a crime, all the evidence he has right now would be enough to put him in jail. 

The trick now is in finding it.  He agreed that the thymus needed more examination, and will be talking to the pulmonologist next week as soon as they have the results of today's CT scan.  Also mentioned some possiblity of the lung, which he said would be where he hoped it was.  

Meanwhile, medication is being changed again - he's on a different blood pressure medicine, Dibenzyline, twice a day.  Also increasing his dosage of cyproheptadine a little.  And he wants to hear from Shawn on Friday to see how that works.  He also wrote a prescription for Toprol, but said not to fill it yet; if the heart rate stays high he will want Shawn to add that.    

So next week we'll know more about next steps.  It doesn't sound like those next steps will be much fun but at the end if they can find and get rid of this then maybe we can get back to life the way it should be, rather than the rollercoaster of worry (and in Shawn's case, PAIN) that we're on right now.  

Choosing Hope Over Fear

The full quote from Obama's inaugural speech is "On this day, we gather because we have chosen hope over fear, unity of purpose over conflict and discord." While he may have been talking about national political choices, the idea of choosing of hope over fear is also one I can realate to in a very personal manner.

I can't control much of what's going on with Shawn's illness. As we go from test to test which reveal little and symptom to symptom which get progressively scarier, some days it seems that fear is all there is. 

But we can choose hope over fear. I know that we have a great many doctors that are working hard to find both a diagnosis and treatment; and we're adding more doctors to that group every day. With all those great minds involved, I can choose to hope rather than be paralyzed by fear.

Last week, Shawn was supposed to come back home and have a new CT scan performed at the University of Chicago. Unfortunately, his plane was first delayed and then cancelled.  He ended up going back to Bloomington and he rescheduled the scan for next week. So next week he'll be in town from Tuesday-Friday and in that time he'll have the CT scan, an appointment with the new endocrinologist, and an appointment with his neurologist.

I'm choosing to look towards next week with hope instead of fear. And I'm sure I'll be reminding myself of that many times between now and then.

Happy 2009

So 2008 has come and gone. One year ago today Shawn was in the ER in Highland Park. He ended the year on Tuesday at the pulmonology clinic at the U. of C. In between, he was in hospitals for both inpatient and outpatient care and testing at Northwestern, Oak Park Hospital, Bloomingon Hospital, Mayo Clinic, University of Chicago. The list of medicines he's been on during the year is too long to even try to attempt to recall.

So where are we? Still trying to control symptoms and still looking for a diagnosis. At the end of this month, on January 28, he has an appointment with an endocrinologist at the U of C who specializes in complicated cases of hypertension.

Here's hoping that 2009 will be a much happier and HEALTHIER year for Shawn. Also a very happy and healthy new year to all of you reading this.