September 9, 2008
Holy cats! Thanks to a slew of generous donors in the last few days, I’ve cruised past the halfway point on my goal of 
$1,000 for Cystic Fibrosis. W00T! Thank you, thank you, THANK YOU!!!!
So far people have donated $735, which puts me to nearly 75% of my goal for the month! Wow!
But don’t stop now! My team has pledged to raise $3,000, and we’ve still got a ways to go. And don’t forget…if you donate $20 or more by Saturday, I’ll send you a signed cover flat of As Shadows Fade.
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So, I promised I’d write up a little about what it’s like to have a child with Cystic Fibrosis.
First, you’d never know by looking at my Pirate Boy that he’s got a fatal genetic disease. He looks like a normal, healthy ten-year-old. Some CF kids are thin and slight, and many are fair and pale (my son is more fair than his sisters, but I’m fair-skinned, so I’m not sure if that’s genetics or not). They also get what’s called “clubbing” on the tips of their fingers. Their fingers can get a little thicker at the tips.
Do this: put your two thumbs together, knuckle to knuckle. See the elliptical space between your nails? Lots of CF kids don’t have that space; their fingers are thicker at the ends. It’s not hugely noticeable unless you’re looking for it.
Anyway, for those of you who are wondering exactly what CF does: in a nutshell, it causes the body to produce a thick, heavy mucus that clogs the organs–especially the lungs and pancreas. This means that any sort of bacterial infection in the lungs is super serious, and that what might be a simple cold or flu can turn into a major problem for a CF kid. Usually, it’s complications with lung infections that cause the death of a CF patient.
Also, the clogging of the pancreas means that the digestive enzymes can’t move from the pancreas to the small intestine, and therefore fats and some other nutrients can’t be absorbed. This means that CF patients need to eat large, high-calorie meals and take digestive enzymes every time they eat…anything. Any. Thing.
So for Pirate Boy, I get him up for school in the morning and we do his morning breathing treatment. This consists of an albuterol treatment through an inhaler and spacer, along with a nebuilzed (misty) dose of Pulmozyme. Both of these inhaled medicines work to open the lung’s airways, and then to break down the mucus that could be clogging there. Also, Pirate Boy puts on a special vest that is attached to a machine that vibrates his chest.
He wears this vest for 20-30 minutes twice a day. This, along with the lung medications, works to keep those lungs open and the passageways clear, and to break down the mucus. It all works together.
Pirate Boy usually reads or draws or plays with his WarHammer figures, or pirates (he’s not called Pirate Boy for nuthin’) during his treatment. He’s used to it, and although most of the time he does it without hassle, there are moments. 
So then, every time he has a meal or snack or anytime anything goes in his mouth (except water), he needs to take his digestive enzymes. He has to take them as he’s eating, or they aren’t effective. He also has to eat a high calorie, high fat diet. This becomes a problem with us for a few reasons:
1. The rest of us don’t need cheese or butter or whatever on everything we eat!
2. Pirate Boy is a veggie eater…and he doesn’t like Ranch dressing. (The nutritionist would think she’d died and gone to heaven if he would eat his veggies dipped in Ranch dressing. But not my Pirate Boy. He likes them fresh and raw and unadorned.) He doesn’t like cheese on his broccoli or cauliflower. Or on his hamburgers. Or fries. He doesn’t like tartar sauce on his fish. The kid eats wayyyy too healthy! (Ironic, isn’t it?)
3. We’re always nagging him to eat, eat, eat. I know he gets tired of hearing this, but it’s so important for a CF kid to eat often and well. Since they have to overcompensate for their malabsorption problems (ie, the fat and calories not digesting properly), it’s important for them to eat extra. And not only that, but being at a healthy weight makes it easier for them to fight off any lung infections when/if they come.
He’s old enough now that he gets his own snacks, and sometimes he forgets to take his enzymes. (Not always; he’s getting better.) If he does, what happens? Well, the food pretty much goes straight through him and out the other end. We can always tell when he’s missed a dose of enzymes!
So, this means every time he goes to a friend’s house or to any sort of event, he needs to take enough enzymes with him. And he needs to remember to take them. (That’s the hardest part.)
And then the kids see him taking medicine whenever he eats, and he does get tired of explaining why he takes them. Fortunately, he’s not at the stage where it bothers him or makes him feel “different” (although I know that is coming)…but as he puts it, he simply gets tired of saying that it’s medicine that he has to take to help him digest his food.
It’s really interesting and heartwarming to me that people who meet Pirate Boy recognize that there’s something different about him. And there is–and I don’t mean his CF. There’s an aura about him, a sort of glow, an energy or a deep happiness…something. I’m not kidding, and I’m not saying this because I’m his mom. He has a “way” about him…that’s the only way I can describe it.
When he was a baby, I went to a psychic at a psychic fair. I told her nothing about myself except that I was married and had two children. She said, “Your son. Does he have asthma? Or something with his lungs?”
“Er. Yeah. He does.” At first I thought she was going to say he was going to die or something!
She looked at me and said, “This boy is very special. He is going to really make an impression on a lot of people. Really make a difference in their lives…to a lot of people. He’s really special.”
Well, I already knew that. But she said that, and it’s stuck in my head for years now…and I’ve found it to be true. There’s something about Pirate Boy. Anyone who’s met him can tell you that.
So I thank you all so much from the bottom of my heart for supporting our endeavors here to raise money for him and for other CF kids–kids who aren’t at their optimal weight, who are in the hospital every quarter, who just can’t seem to get healthy. Thank you and God bless.
September 9th, 2008 at 10:52 am
[...] Original Colleen [...]
September 9th, 2008 at 11:33 am
I can’t stop looking at the awesome As Shadows Fade cover. It is really my favorite one out of all!
September 9th, 2008 at 12:54 pm
Colleen, is there a constant worry about sending him off to school and being exposed to so many respiratory-type illnesses?
Lynn
September 9th, 2008 at 1:29 pm
Heh, Katiebabs, I know whereof you speak. I love that cover, especially since the guy looks like a young Johnny Depp…don’t you think?
Lynn, that’s a great question. And the answer is yes, but what can ya do? He’s going to be exposed, so we try to remind him to wash his hands (heh…he’s a boy. ‘Nuff said.) often, and that’s part of why we try to keep his nutrition in line: it keeps him healthy overall.
Often, when a CF child gets even a little cold, the doctors will prescribe antibiotics. The idea is that they don’t want to take the chance that it will blow into something bacterial.
We’ve tried to walk the fence with that–we try not to put him on the drug unless we need to, because of course, we don’t want him to build up too much immunity to the drugs. However, the docs feel that it’s better to chance building an immunity to the antibiotics than to let a cold grow into something worse.
So, yeah, we’re concerned with the germs at school and elsewhere, but we don’t want to put him in a bubble. He’s going to get the germs everywhere; there’s something to be said for letting him build his own immunities.
It’s things like Scout camp, where there could be mold growing on the cabins which, if he inhaled it, would probably make him severely sick…those are the things I tend to worry about more.
September 9th, 2008 at 1:56 pm
So Sebastian looks like Johnny Depp? *wink wink*
September 9th, 2008 at 2:18 pm
When my oldest was 3 months old, I had to send him to daycare. When he was there, we met Emily. She is 3 months older than Chad. And through the years we’ve known her, she has been Chad’s “girlfriend”. Although they go to different schools now, (they are 12), Chad and Emily are still friends. We have done playdates and sleepovers. And since they were 4, they said they will get married someday. It’s cute really. They were together in the cradle, and are still friends today. I know that Emily still carries Chad’s picture around with her.
The reason I bring all this up, is that Emily and her little brother both have CF. We’ve done all the “walks” and the fund raisers around here. Every year. If I had more extra cash lying around, I would send some to you. (Just can’t afford to right now, though.) But I know what it’s like. It takes a strong family to go through what you are doing.
September 9th, 2008 at 2:31 pm
Colleen, what an amazing kid you’ve raised! He’s got such gorgeous soulful eyes. I’ve had pneumonia six times in my life and remember vividly as a kid having percussion done on my back to get some of the fluid out of my lungs. And I remember vividly crying about it. I’m amazed at how tough Pirate Boy is!
The psychic was right, he IS special. Thanks for sharing this with us!
September 9th, 2008 at 4:14 pm
Oh, Colleen - he’s beautiful! I’m so glad I’m doing this CF writing challenge too (although donations on my end seem tp be particularly slow, apparently due in part to Canadians having issues in getting it to accept their donations). I may not have raised much, but I will continued to do my best to promote this and to raise money for this cause.
September 9th, 2008 at 9:06 pm
Well, since I have been off in “busy life land”, this is the first I have even heard of this… This is why mark all as read can be a bad thing! What a great idea, though! Two of my closest friends in the world had CF… I say had because they have both passed… So, I am well aware of the CF world!
September 10th, 2008 at 7:51 am
Hey Colleen,
Pirate Boy is gorgeous…..and I might say, starting to look like you. That Look and mouth are unmistakable. What a great idea to do this writing contest. I will definitely pledge. Good to hear all are healthy.
September 10th, 2008 at 11:47 am
Thanks for all your sweet comments about Pirate Boy. He is a total doll. Except when he’s pushing my buttons.
Which is often.
Anyway, Stephanie–thank you so much for your ongoing support for CF. Sounds like you’re in the thick of things yourself. I hope Emily and her brother are doing well.
September 12th, 2008 at 9:40 am
Hi,
Thanks for stepping into the spotlight for a good cause. I hope that you make your goal!
Lys.
Green Oak
September 12th, 2008 at 11:18 am
[...] Gleason is participating in a fund-raising event for the Cystic Fybrosis Foundation. She has a beautiful blog post at her site about her son, who has the disease, and is also having a special give-away in conjunction with her fund-raising [...]
September 17th, 2008 at 8:45 pm
Hello. I’m a healer and medium, and followed a link on lj, J Frost, to get here. Good story, great kid, fantastic mother. I heal similar to Eric Pearl (his book ‘The reconnection’) and I’d like to send your son, and family, some distant healing. I’m in Australia. Message me on lj if you like. Take care, Simon.
September 29th, 2008 at 5:14 pm
[...] Pirate Boy and I thank you and everyone who’s donated for all the support! [...]
October 16th, 2008 at 5:30 pm
I would like to say great job, and thanks for all your hard work. i too have a nephew with CF and it can be very hard at times to get other people involved, we just had our annuel walk and it really turned out to be something great it was our best year yet!! your son looks great i wish him and you the very best and may God bless you and your family and i will be happy to donate. take care with love, Brandi, midland texas
October 29th, 2008 at 8:30 pm
This is amazing. I also suffer from cystic fibrosis, and have dealt with medications and sickness all 19 years of my life. I am recently starting up a blog to get the word out and raise money for myself and foundations dedicated to Cystic Fibrosis. I am on my way to having to get a second double lung transplant. I spend most of my time in and out of the hospital, and your novels are what keep me company and allow me to escape thee cold steril room.
January 8th, 2009 at 11:41 am
Mrs. Gleason
I understand what you are going through. My oldest cousin has CF and us as a family have fought very hard to keep her healthy and she is now 27 years old. She has her ups and her downs, but we try to keep her spirits as high as possible. I speak about CF to anyone to wants to know what CF is and how to help!