January 8, 2011


For us, it sometimes seems that there are two worlds when it comes to CF.  The world of pancreatic sufficiency and the world of not.  To the layman this may be new ground.  Pancreatic sufficiency?  What's that?  I thought CF was a lung thing.  What's the pancreas got to do with it?  Quite a bit, actually.

For upwards of 85% of those fighting the effects of CF, the pancreas is a real thorn in the side.  Literally.  Do the math and that's roughly 25,500 individuals who are not only fighting for every breath but also fighting to keep their bodies adequately nourished.  You'll recall that one of the major nightmares associated with CF is the thick, tarlike mucus that gets stuck, plugged up if you will, in the airways of the lungs.  This crud, for lack of a better word, also coats the intestines and pancreas causing the digestive enzymes that your pancreas makes to be unable to reach your small intestine.  These enzymes help break down the food that you eat. Without them, your intestines can't fully absorb fats and proteins thus impeding the nutrients from getting to where they need to go.  Kind of a rough problem to have don't you think?  Break down the 'malnutrition' euphemism and I'm talking about some really important vitamins not being absorbed into the body which can make for a real mess.  Imagine eating a full meal and not getting any nutritional bang for your buck; instead, it running straight through you like water through a seive. 

Take vitamin A for example.  Wanna have some skin problems?  Okay then, eliminate it. 

Then there's B12.  Wanna be anemic for a while?  Fine with me, nix that one too. 

Don't forget about vitamin D.  If you're up for some bone abnormalities axe it along with A & B12. 

Oh yeah, let's not leave out vitamin E.  Neurological problems, anyone?  Really?  Okay, zap it.

You want some more?  Fine.  I'll raise you some blood clotting issues for your vitamin K.

Vitamins A, B12, D, E and K are what I think of as the BIG 5 when it comes to CF.  I'm usually on the edge of my chair when Elaine, the dietician on our team, reads off the kids' levels from the blood tests.  I don't know about you but I think it's high time we had a Pancreas Appreciation Day.

Lucky for Charlie and Lola, we are still living in the world of the other 15%.  Yep, in one aspect of CF we actually won a prize:  pancreatic sufficiency.  Both kids have a pancreas that is fuctioning enough to get by.  Enough meaning, nope, it's not quite normal like the average Joe's, but it is managing to process enough of the goods that we don't have a regimen of enzyme pills to pop before every meal.  As I type this, I wrap a couple knuckles loudly on the wooden table where my laptop sits;  once for good luck, twice for continued good luck and a third time just to be sure Whomever heard me the first two times.  We were told from the git go that pancreatic sufficiency can be a fleeting thing, often waning as time goes by.  So for the time being, I rewind and hit play every few days or so just so I can hear my pediatrician's words of wisdom from way back when we got Lola's diagnosis, "Enjoy the good health while you have it..." 
That said, we pay very close attention to the kids' diets; in short, what goes in AND (drumroll) what comes out. 

Even before we became a CF family, we were particularly Nazi in our menu selection for Charlie.  The kid never knew what Gerber was because his Papa made all of his baby food from scratch - typically Spanish if I do say so myself.  Breast milk for the first year, formula never touched his lips. The poor kid never even had a cookie or ice cream until well after his second birthday.  Abusive?  No.  Neurotic?  Perhaps. And quite naturally, we were the laughing stock of the entire extended family.




Whatever.  We had our premie, he was more than thriving and Joe and I made a pact that no matter what the cost, our kids would ALWAYS be given REAL food for a fighting chance at developing a decent palate.  We also agreed that we would never sell out to the convenience of fast food chains or the pleas for Coca Cola.  Afterall, what exactly are the nutritional benefits of giving pop to a 2 year old?  We figured that if he never had it to begin with, that he wouldn't know what he was missing.  And guess what? 

We were right on the money.

Charlie ate like a king and was climbing up the growth charts.  The kid was remarkably healthy too, which we attribute to a diet that is rich in fruits, vegetables and fresh proteins.  We have consequently followed the exact same philosophy with Lola and now Henry.  Until last week.

Yeah, last week was a first for me as a parent.

We were out east at Joe's sister's house; celebrating the birth of Christ and mourning the loss of Babu Mercedes.  It was bittersweet; the whole family together but the center of it - the heart - missing.  Joe's mom had been fighting one form of cancer or another ever since I had met her some twelve years ago.  We were all devastated at the loss - our loss...but thankful that her suffering had finally come to an end and that she had passed with her children at her side.  So there we are, fumbling through the ritual that is Christmas, still somewhat numb from the loss but finding the joy through the eyes of the children who are squabbling, playing, teasing...just being kids.  At one point, we decided to divide and conquer a seemingly insurmountable to-do list by splitting the kids up amongst the adults.  We took off, tackled our respective lists and met back at the house to debrief.  And this my friends is where the double homicide nearly occurred.

SIL:  Lola, did you tell Mamá what you had for lunch today?
Me:  Did Tita Susi and Tita Pepis (note:  Pay-peace, not Pepsi) take you out for a special lunch, honey?
Lola:  [grinning from ear to ear]  Mmmmhmmm.
Me:  What did you eat?
Me:  [hopeful yet worried]  Madonnas?
SIL:  No, she means MCDONALD'S.  And you shoulda' seen her!  What a machine...she went to town on it!
Me:  [jaw clenched, forced grin and feeling like I want to crap all over her white carpet]  What did you order for her?  Chicken nuggets?
SIL:  Are you kidding me?  A BIG, greasy hamburger.  You shoulda seen her wolf that thing down!
Me:  [dryly] Well, I hope she enjoyed it because it will be the last one she ever eats.

The maniacle fits of laughter spouting from my sisters-in-law sent me out the front door and around the block on a fast walk.  Pissed doesn't even come close to describing how I felt at that point.  I was furious.  Go ahead, feed that garbage to your kid, but not mine.  Hadn't they seen Jamie Oliver's experiment?  Well yeah, it was considered by most to be an 'epic failure' but it sure did illustrate a point.  We had invested nearly 5 years in teaching the kids about what a  heatlhy choice is and why it's in their best interest to eat for fuel and these two knuckleheads had undermined everything in 2.2 minutes.  INTENTIONALLY.

I decided to let it go and left it on the back loop of the sub division.  The damage was done.  Ronald McDonald had found his way to my little girl's digestive tract.  I'd just have to keep a closer eye on her the rest of the week - no more 'errands' with the Titas, that was for sure.  So not wanting to make a scene, I trudged back to the house and vowed not to make an issue out of it.  Afterall, the more I drew attention to it, the more the kids would remember the whole thing.  I would give the Titas a Get out of Jail Free card and chalk up the lapse in judgement to extreme grief.  For now it was best to let sleeping dogs lie.

Now reading this, I know there are some eyeballs rolling so let me explain my point of view on the whole fast food boycott.  I know that for many with CF, especially those who are struggling with digestive issues, that food becomes a major focal point.  I've heard so many talk about pumping in those extra calories in any way, shape or form because the effects of CF really make it a challenge for people to keep weight on.  For me however, I struggle with the concept of 'anything goes' just to get the calories up.  When I think about how that processed food is made; the chemicals, the grease, the scraps, the fat - it just cannot be good for your body at all.  I think about foreign nations who perhaps aren't so developed as we are and I wonder, how come I never read about them having a high rate of obesity, heart disease, cancer, diabetes, etc.?  I'm no scientist - in fact I'm about as far left of scientist as one could possibly be.  However, I believe to my core that good nutrition has made a difference in the health of my kids - less flu, less colds, less everything and I'll be damned if I'm gonna sell out now. 

As for Lola's Date with the Devil?  I guess I'll just be thankful that her GI tract is solid enough to handle the garbage that the titas dumped into her. 


  1. We feel the same way about nutrition at our house, and I made all of the kids' baby food for those first few years. I remember when I went into the grocery store next to our house and asked for a jar of baby food, just to have in the baby bag when we went out, just in case, the workers looked at me like I was on crack and then just kept telling how easy it is to make. A similar thing happened when I asked for frozen chicken nuggets a few years later. Instead of leaving with a bag from the freezer dept, I left with a handful of recipes for chicken nuggets. It just shows that diet is important there. It has thus since become important to me. And it's a constant fight with my family here who don't understand. Sophia is allergic to wheat, eggs, and milk. Doesn't stop them from making her scrambled eggs and cheese biscuits for breakfast. But you'd think your family would be different since you have so much more riding on it. And Joe's sisters are Spanish. What happened to them?

  2. Jamie your so right about the diffrence in nutrition between Spain and the US. However, with the new working mother scene in Spain, more and more mothers are being forced into the baby jar. Convenience and speed, it's easier for them in this new globalized world. As for my sisters, well what can I say as "Spanish as Apple Pie"! Be careful, Javi may just end up that way after a few years.
    Mandamelo, paka... que tenemos que hacer un fin de semana de Machos Ibericos!

  3. You are doing an awesome job Miss PicklePits!!! I believe my boys getting the right nutrition is the reason why we have seen lung issues disappear or simply not show up!! Our boys are SEVERELY PI, so we are extra extra careful....
    Keep going, you are on the right track!!!

  4. Thanks for the support, guys. I guess looking back on this whole episode, I've learned one really important lesson: I need to do a better job of communicating not just the "what" (ie. no fast food for the kids) but the "why" behind it. My friend Susie, also a CF mom, has alluded to this in the past. It's no one else's job to do what's best or even know what's best for our kids. Maybe if I had done a better job of explaining our reasoning, the Happy Meal that was wouldn't have ever been...