Wednesday, September 24, 2014


(pic: Kasey's 'new' Honda Rebel, AKA: Graduation Gift)

Back in June,  one of the results I neglected to share is the genetics research on Albert's DNA.

His DNA has been traveling for 7 months; across the country, then out to Sweden and back!!

The reason he is getting all these tumors (thymus, parathyroid, and pituitary) has been detected/confirmed.

He has a syndrome called MEN-1 (Multiple Endocrine Neoplasia-Type 1).

MEN-1 is NOT CANCER.  However, it causes tumors to develop throughout the endocrine system.  Sometimes the tumors are innocuous, sometimes benign but troublesome, and sometimes cause cancer.

About now, you may be asking: How on earth did he get that????

I'm soooo glad you asked!!!!!

He got it in one of two ways:

     1. genetically from one or both parents
     2. he has a first generation gene mutation that occured in utero (while he was in his mama's belly).

The only way to know for sure how he got it is to have his parents and siblings tested for the same gene mutation.  The family has the option to be tested. (simple blood test)

The scary part for us is that since he has it, our children have a 50% chance of inheriting it from him.

The kids are here with us this week because they are getting their turn becoming MD Anderson patients.  They were assigned to the Endocrine Center for genetics testing.  By simply giving blood samples, a whole battery of tests can be run to determine if either of them inherited the genetic mutation, AND if so, determine if they have any indications of possible (and hopefully early) disease activity.

Remember, MEN-1 is NOT CANCER.  However, if either of the kids does have the syndrome, we will be able to proactively and aggressively prevent lots of problems!  Through routine blood work and occasional  scans, we will be able to address anything that comes up, while it's still small, before it becomes a bigger problem.

For more information on Multiple Endocrine Neoplasia, please visit the MD Anderson Website:

I think we are all caught up from the June visit...let's move on to the here and now...

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