Wednesday, November 6, 2013


My kids were unfortunate enough to be born with Familial Polyposis too.  They had something going against them from the minute they drew their first breath.  Although they were otherwise perfectly healthy, there was a ticking time bomb inside of them.  But we are fortunate enough to know that my kids have FAP.  Not everyone is that lucky.  Up to thirty percent of people with FAP have no family history of it and they are the first person in their family to ever have the disease.  This is called an index case.  It’s the first person in a family line to be born with a spontaneous genetic mutation.  The area on the 5th chromosome where the FAP mutation lies is an area that’s known to be hypermutable.  This means that a particular area along the chromosome is known to be abnormally unstable.  There are many other places along human DNA, on other chromosomes, that are also hypermutable and result in a number of other genetic diseases. 

The point I am making is that I am lucky enough to have the knowledge of my family history of FAP, so my family knows to look for its ugly presence.  If you have an index case, you are even unluckier, because there is no reason to ever think you’d have an extremely rare genetic mutation in your DNA.  These individuals are going about their adult life quite normally until they are derailed with some kind of abnormal symptom – usually blood in the stool, which leads them to all kinds of doctors and testing, and ultimately, a devastating diagnosis of colon cancer.  It would be a horrible way to find out you have FAP.  I can only imagine the shock and extreme confusion this would cause to find out you have one freakish and uncommon disease most doctors have never heard of. 

So I count myself lucky.  I get the privilege of knowing my family’s genetic history and I was blessed enough to get to know at the very beginning of my children’s lives that I would have to protect them from this monster.  They say knowledge is power.  It truly is.  Both my children hit the ground running with the testing and screening to keep the disease at bay.  FAP can cause liver cancer in children under the age of six.  My cousin Kevin died from this very cancer and he did have FAP.  Starting at six months old, both my children had liver ultrasounds and their blood drawn to check their liver enzymes, and they did this every six months until they were six years old.  From an early age, my children grew used to being poked and having to sit still to have tests done.  I’ve never understood those parents who cry and act overly-dramatic when their child needs to have a shot or their blood drawn.  It’s not a big deal honestly.  Children don’t like it, but ten minutes later, they’re over it and honestly, they might remember it, but they don’t dwell on it like many parents do.  Get over it – your child will be just fine, it’s just a little poke and in the scheme of things, it could be so much worse, like surgery.

And surgery is just what was on the menu for my kids.  Marcus and I decided when Zehariah was very little that he, and any sibling he might eventually have, would have to have their colectomy young.  Why?  Because it’s not fair, nor ethical, to put a thirteen or fourteen year old through colon surgery, an ileostomy, and temporary incontinence.  It’s hard enough to be a teenager in America, with all the social media, bullying, and peer pressure.  Try being a teen who is running to get to the bathroom in time at school, only to miss and soil their pants.  How embarrassing and how cruel to knowingly do that to a teen.  Many FAP parents do choose surgery during the teenage years for their children, and this happens to be the most common time that FAP patients have surgery.  It makes no sense to me and quite honestly, I find it sadistic.  

In my opinion, having gone through the surgery myself, the best time in your life to be in this delicate position is when you are a small child.  Five and six year olds are not quite aware of the social world around them yet.  Bullying, peer pressure, and picking on other children hasn’t developed yet.  Five and six year olds don’t know that pooping your pants is a problem and if you do, they don’t really care.  They like to talk about poop and farts and they are fascinated with it too.  They haven’t learned from their fecal phobe parents yet or society that pooping is something to be ashamed of.  When children are small, their memories are not very detailed and they adapt to pain and change in body habits much easier.  The older you get, the harder it is to go through the bowel changes that the surgery causes and the harder it is to heal and adapt to.  For so many reasons, the younger you go through surgery, the better.

So, Marcus and I decided very early in our children’s lives that they would have surgery at the end of kindergarten, just before they turned six respectively.  It’s not a big deal to miss a few weeks of kindergarten, and when you come back to school, the kids don’t really care what happened to you, they just want to play and be silly.  They don’t feel afraid of you, like you have the plague or something, and they have no need to make fun of you because that’s not on their radar.

I did the same thing for each of my children when they had their colon removal surgeries.  I prepared them emotionally and physically for the surgery.  I took them to psychologists before their surgery so they could learn what to expect and feel safe to talk to someone about their fears, other than Marcus and I.  Both Zehariah and Bluma went on tours of the hospital, to see where they would have surgery and where they'd recover.  They got to see the play rooms and the fun places of the hospital too.  I invited friends, family, and classmates to visit Z and Blu at the hospital, so they felt like they weren’t isolated.  I decorated their hospital rooms with their artwork and the artwork of their friends who would come to visit them at the hospital. I bought them presents and wrapped them up so they had gifts to open while they were sick and recovering there.   I wanted my kids to experience a hospital stay I did not.  I wanted them to have a “trip” to the hospital, not a prison stay at the hospital.  I wanted them to experience positive things, instead of all negative.  Sure, they experienced some pain, but it wasn’t all bad.  There were friends and family there, presents to open, toys to play with, AND, they didn’t have to go to school! 
I, quite honestly, tried to trick their brain into thinking the whole thing was more fun than agony.  And to this day, almost six years post-op for Zehariah and two years post-op for Bluma, my kids don’t remember much pain.  They just remember their hospital rooms, some of the gifts they received, and friends coming to visit them.  They don’t remember the gory details, and that’s exactly my goal.  I don’t want them to have the emotional baggage I do.  I want them to grow up tough and resilient, but not scarred from their battle with FAP.  So far, they have shown me that they are the toughest kids I know.  Both of my kids faced their surgeries head-on, showing bravery and strength, getting through their hospital stays with courage and positive attitudes, and I know they are stronger for it and will get through anything life throws at them.  And no matter what, I’ll always be there to support them and cheer them on. 

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