Thursday, May 21, 2015

Great Strides update 2015

The final amount that Team Jacob raised this year was over $10,000. A stunning achievement. Furthermore, Sophie and Jacob were both in the top five for teens/kids raising money for the walk.

The Valencia walk raised over $70,000. That's staggering. Valencia is not a large city, yet our community continues to pull in some big bucks to kick CF's ass.

If you're reading this, thank you for your support and prayers. If you donated, don't worry, chill, cheetah, your thank you note is coming. I made a promise and I will stick to it.

I never realize how stressful the walk is until a week or two after it's done. I feel a weight off of my chest. I've become so accustomed to suppressing my fears and sadness over CF. Yeah, that ain't a good thing.

Thanks again.

Aloha

Monday, May 4, 2015

Super Heroes and a Real Super HERO

Jacob and I went to see the latest Avengers movie yesterday. He thought it was awesome and had a hard time deciding which he liked better than last summer's Guardians of the Galaxy. Before our screening, there were no less than three super hero movie trailers! This wave of comic book movies has no end in sight.

Watching the film, though, I couldn't help but think that Iron Man, Captain America and Hawkeye don't hold a candle to the guy who was sitting next to me. While the stories of extraordinary humans with mighty powers are fun and a great way to escape, the real hero in my life is Jacob. What he lives through on a daily basis is more than any kid should have to endure. I wager to say that Bruce Banner wouldn't complain so much about his anger issues if he was living with cystic fibrosis.

CF is a pain in his tookus. Besides the obvious traits of the illness, here's some of the stuff he has to put up with. He misses school because his chest hurts or he's coughing too much or his stomach is really bothering him. He has to wake up aat 5:30 AM just to fit in his breathing treatments, take a shower (which helps open the lungs, as well as make his hair look good) and squeeze in a couple bowls of cereal. At night, when he's exhausted because his body is working overtime to keep him healthy and he made it through the school day, he does extensive homework and has a snack before it's time for his nightly breathers and then it's off to bed.

By now, this has become a routine for him, for all of us, and while there are the occasional moan and groans, for the most part he weathers it all really well. I question if I could have handled something like this when I was 13. Doubtful.

This kid, throughout it all, is the funniest, most interesting and loving young man I know. I wish I could say that he learned this all from me or Julie, but I believe that it's just Jacob's nature to be a really great kid. He is an example we all should follow when it comes to handling the curveballs that life throws at you, or in his case smacks you upside the head with the moment you're born. I only wish I could do more for him when it comes to raising money for CF. The best I can do is write.

And so I write because it's what I was born to do, and because I can use words to appeal to you. Please, consider helping us find a cure to this monster called cystic fibrosis. Help us prolong the lives of men and women and children.

One of my favorite scenes in a super hero movie is in Spider-Man 2 (the Tobey Maguire one). There's a brilliant sequence when Spidey has to stop a runaway train with every ounce of strength. He manages to save everyone on board, but collapses. The passengers lift him over their heads and carry Spidey back into a passenger car, where he can rest. When he comes to, even though these strangers have all see him unmasked, they tell Spidey that not worry. They have his back and they'll never reveal what he looks like.

This is our chance to help out my hero and show him that we have his back. We can all lift him up by donating to end cystic fibrosis so that he may someday rest without worry.



Aloha

Tuesday, April 21, 2015

Thursday, April 16, 2015

Flashback Thursday: Don't Be a Turkey!



Here I am in the 90s, when I worked for Tony Gardner and never wore a belt. I was also a bit , ahem, skinnier back then. ANYWAY, I post this pic and ask if you've considered donating to Great Strides this year.

You haven't? Well, don't be a turkey. Help change the lives of thousands of children, teens and adults living with cystic fibrosis, like this guy...


Jacob thanks you.

Here's the link: Jacob's Donation Page

Aloha

Tuesday, April 14, 2015

My take on "Justified"

One of the finest shows on TV these past six years has been FX's Justified. Based on an Elmore Leonard novella entitled Fire in the Hole, the series followed the exploits of a Deputy U.S. Marshal named Raylan Givens, as played by the exceptional Timothy Olyphant. Raylan's primary nemesis was Boyd Crowder, an outlaw from the Kentucky hills who once worked in the coal mines with Raylan. Boyd was played to perfection by Walton Goggins.

While Raylan and Boyd were strutting their stuff week in and week out, the producers of Justified, led by show creator/showrunner Graham Yost, also created a stellar group of women characters who often stole the spotlight from the two peacocks of the series. In particular Joelle Carter as Ava, Natalie Zea as Winona, Erica Tazel as Rachel Brooks, plus guest stars like Mary Steenburgen as Katherine Hale, Kaitlyn Dever as Loretta McReady (she's an up and comer we should all keep our eyes out for) and Emmy winner Margo Martindale as Mags Bennett.

Tonight Justified airs its series finale. I had the opportunity to see it last night night at a special screening and I have to say that it's fantastic. Fans of the show will not be disappointed. If you're a writer wanting to see how great TV writing can be, you can check out each season on Amazon or Hulu Plus.

Yesterday I wrote more about Justified over at Popdose. I hope you'll check it out.

Here's the link: http://popdose.com/the-three-strike-rule-justified-fires-one-last-round/

Aloha.




Thursday, April 9, 2015

I have been a jackass; don't hold it against my son

I know. I've been terrible at sending "thank you" responses to all of you awesome people who have donated to Great Strides in the past couple of years. Please... please, please, please... don't let that affect whether you'll make a donation to Great Strides this year. Want to be pissed at me, that's cool. I deserve it. I've been a jackass and let a general malaise hover over me like a storm cloud that refuses to rain. But this isn't about me. It's about Jacob and the thousands of other children and adults living with cystic fibrosis.

What can I do to make it up to you? Want a short story? I'll write you one. A short film? May take a little time, but consider it done. A copy of King's Highway? Send me your address and it's in the mail. A copy of Basement Songs? Okay.

I love my son more than any words on a blog can get across. I do not have thousands of dollars to donate to the Cystic Fibrosis Foundation to continue their groundbreaking research on treatments for the disease and progress toward a cure. So I must turn to you, my friends.

I apologize. And I beg you, please consider donating. When we say every little bit helps, I'm not just feeding you a line. If 250 people donate just $20, Jacob reaches his goal of $5,000. That's nothing.

That's all I have for today. Thanks for your time.

Here's the link: http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=2247535&pg=personal&fr_id=3288

Aloha

Tuesday, March 24, 2015

Great Strides 2015... with an AWESOME video

Jacob has pneumonia again. He has a cough that causes him to double over, shaking his entire body. He's had trouble sleeping through the night thanks to the cough. Well, thanks to CF. A simple cold can quickly turn into something else with CF kids, as it did in this case. But Jake is a champ. Although he's in a lot of pain, he still manages to  crack jokes and make us laugh.

I bring this up as a segue into the following announcement: The Cystic Fibrosis Foundation's Great Strides walk for Valencia, CA (which is where I live) will be on May 9, 2015. This post is the beginning of my fundraising for Great Strides.

Here are some facts that you probably know, but I'm going to repeat them:

Cystic fibrosis is a life-threatening illness that effects the lungs and digestive systems of people born with it. In people with CF, the body produces a thick, sticky mucus that clogs the lungs and obstructs the pancreas.

Because of the mucus in the lungs, bacteria likes to grow and wreak havoc. CF patients often develop lung infections that can be life-threatening. The mucus blocking the pancreas prevents natural enzymes from helping break down food and absorbing nutrients. To date, this has been Jacob's biggest obstacle. But we know families whose children who have to be admitted to the hospital at least once a year.

Every since Jacob was diagnosed with cystic fibrosis at ten weeks old we have participated in Great Strides. In those 13 years, our family has raised over $100,000. This is a figure that I'm very proud of, but until there is a cure for CF we will continue doing whatever we can to raise money and awareness for this horrible illness.

Since 2008, we've been making fundraising videos to help support our fundraising efforts. This year, Jake had a really fun idea that required a little more work on his part and help from his friend, Sam.  I think it turned out pretty cool, and I know that Jacob was very excited about it \.

Please watch the video. Even though he gets a little "animated," I think you'll see that Jake is one great kid. If you listen closely, you can hear his favorite song by One Republic playing in the background.

This year I'm directing people to Jacob's personal fundraising page. I hope you'll go check it out and consider helping us find a cure for cystic fibrosis. Here's the link:


As always, I am humbled by the generosity of my family, friends and the strangers who are kind enough to make a contribution.

Aloha





Thursday, March 19, 2015

Basement Songs Rewind: Coldplay, "Fix You"

The 2015 Valencia Great Strides is a little over a month away. Among the things I want to do this year (including personally thanking everyone who donates-- sorry!) is repost some of my CF related posts and columns from the past years.

This year is kind of exciting because Jacob and I are working on a special fundraising video that we hope to have completed this weekend. Fingers crossed,

Anyway, here is a 2011 BS entry for Coldplay's "Fix You." Every time I hear this song, it's hits me with an emotional wallop, especially the live version. This entry ran in April of that year, so there are references to the Indians already playing winning baseball (they would finish 80-82 that year, bleh).

Thanks for reading.

Aloha


Here are two phrases I never thought I’d say in this year: “The Indians swept the Red Sox” and “Cleveland is in first place.” Hope springs eternal each spring when Major League Baseball begins its season. We fans are optimistic even when our team is mid-market and does not have the gargantuan payroll of ESPN favorites like the Yankees and Phillies. A scrappy group of aging vets and wet behind the ears youngsters can show the world that you don’t have to be the richest team to succeed; you can develop talent in the farm leagues and make savvy trades. Yeah, that’s what we fans of smaller market teams tell ourselves each year before the first pitch is thrown.
Springtime is a season full of hope in our household, not just for sporting reasons. The spring also marks the time of year when the Cystic Fibrosis Foundation holds their annual Great Strides walk in our hometown of Santa Clarita, CA. For those of you who have read the Basement Songs over the years, you know why Great Strides is significant to the Malchus family (and the Popdose staff). My son, Jacob, has cystic fibrosis (CF).

CF is a life threatening illness that creates a thick, sticky mucus in the body. This mucus clogs the lungs, creating the potential for infections. It also blocks the pancreas, preventing it from releasing the enzymes he needs to absorb nutrients. There is no cure. Each day, Jacob undergoes three breathing treatments with a nebulizer and dons a chest vibrating device called “The Vest.” He also takes oral enzymes with each meal to ensure that he stays strong and healthy. It’s a hell of a lot for anyone to live with, let alone a spirited nine-year-old boy who just wants to be “normal.” Jacob handles most of his daily routines in stride, although his anger and frustration has risen steadily over the past year.

Each year our family organizes a team of walkers for our local Great Strides. We call ourselves “Team Jacob.” Among the efforts we’ve done in the past is edit short videos to introduce people to Jacob and this dreaded disease. It’s an effective tool, sometimes too effective. Jacob’s big sister, Sophie, can no longer listen to George Harrison’s “Here Comes the Sun” and Bruce Springsteen’s “Workin’ on a Dream,” songs we used in previous videos. Hearing those classic tracks remind her of the images we pieced together and hurt her heart too much. I know how she feels. A couple of years ago a family we know used Coldplay’s “Fix You,” as a part of their campaign and from now on that song will always be associated with CF and that family. Listening to this live version of the song is even more powerful, with the audience singing along with Chris Martin, as I imagine the combined efforts of all CF families and their friends singing as one.

It’s become our tradition to hold a gathering at our home after each Great Strides walk. This is the least we can do to thank our friends and family for joining us in the morning walk and helping support our cause. Over the years our team has grown. In addition to my brother and his family, Julie's brother, Seann, the Cruz family and our neighbors, the Wills, school friends like the Conards, the Boss family and the Stinsons have been there for us. There is also my high school buddy, Jay, and of course, my parents, who drive out from Tucson each year. 2011 was also special because Julie’s mom and dad were visiting from Ohio and were able to experience it with us. I dream of someday having all of the good people who have helped us over the years to come out and join us. As inviting as our small ranch style house is, I don’t think they’d all fit.

Our little party was festive, with music playing in the kitchen, kids running around and tackling each other between belly laughs, pizza and beverages for everyone, and a game of corn hole for all who wanted to play. Meanwhile, with free MLB games on television all weekend, a small group of men sat in the living room and watched the Indians take on the Seattle Mariners. As I’m accustomed to doing during these get togethers I wandered between the small groups and took in bits and pieces of conversations. I sometimes can’t believe how blessed we are to have so many people who care about the welfare of our family. I must admit, though, that I kept getting drawn into the living room, where my brother, my dad and my father-in-law were all enjoying the baseball game.

The Indians are in first place.

What a great feeling for a Cleveland fan. Still, I’d make a major league trade of all the joy I receive from watching my favorite baseball team win some games if I could fix my son’s illness. As much as I like hearing that the Indians are in first, I’d love to hear a different phrase, one that goes like this:

CF stands for cure found.

If you would like to help the Cystic Fibrosis Foundation, you can visit this link to make a donation.



Originally published on Popdose, April 17, 2011