Thunderbolt

On Wednesday, Jacob put up the bravest Instagram post I’ve ever seen from him. In it, he talked about how cystic fibrosis has not only affected his physical health, but his mental health. This took courage because this young man is only 17. Throughout the years, he’s struggled with what it’s like to have CF, and what it MEANS to CF. So much of his life has been defined by being Jacob Malchus, the son, the cousin, the best friend, that boy in school or church who has CF, he wondered what it would mean not to have something that has been a part of him for his entire life, even though it’s a chronic illness. That’s a pretty tough question, one that most adults would have difficulty answering, let alone a teenager. Being his father, I’ve witnessed Jacob’s struggles first hand. I’ve lost count the number of times I wished I could reach in and remove CF from his body. It’s every parent’s dream that their child stays healthy. On their way home from...

Hi. The Valencia Great Strides walk for the Cystic Fibrosis Foundation is 10 days away. We're inching toward our fundraising goal, but we still need help. I know what you're thinking, because heck, I've thought it myself at times. "I don't have a lot of money to give, so how can it possibly help." My friends, every bit helps. I will use Bernie Sanders as an example.  Not his politics, because this is definitely not about that, but the success of his campaign. Regardless of what you think of Mr. Sanders, he has raised A LOT of money through small donations. People with limited means believe in his cause and give what they can. THAT is what I'm talking about. Most of the money that the Cystic Fibrosis Foundations takes in goes directly into research. So... every bit counts, no matter what the amount. This year, Julie's school held two bake sales, selling cookies and Rice Krispie treats. They sold for a buck each. She doesn't work at a large school an...

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

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 coug...

I give you the latest and greatest featuring Lego Jake.  What do you think?

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...

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 wrea...

Before I get into any more news about Legendary and when it will begin posting, I MUST give an update about this year's Great Strides. Team Jacob raised over $9,000, and the Valencia Great Strides walk has raise $112,000 to date! That's frickin' amazing. Our small community raised a butt load of money!! The walk day was hot and wonderful. This year we were in a new location at the mall, one that was a little removed from the "in your face" presence we've had in years past, but the flip side was that the traffic was a little safer. The turnout for the walk was exceptional, and our team had close to 50 walkers. I owe all of you personal "thank yous," and they will be forthcoming. For now, I'm sending out a HUGE, universal "thanks" to all of our family and friends. It's your love and support that has kept our family afloat and filled with optimism. I wish I could hug each and every one of you. Alas, that would be costly and some of yo...

The radio silence on my end is typical around this time of the year. Besides the other stuff going on in my life - work, podcasts, family - fundraising and stressing out about cystic fibrosis tends to consume everything. This year we started out slow in raising money for Great Strides, the annual Cystic Fibrosis Foundation fundraiser to find a cure, but things really kicked into gear these last two weeks. Our team set a goal for $5K, and we surpassed that by over $2,000. Among the ways that we had people contribute (beside the usual soliciting of money through emails and posts) were a fund rasier at Jacob's school, a bake sale at the school where Julie works, Sophie's own efforts, and a bucket I placed on a table at my office. All of these proved to be successful ways to raise money. It was very, very thrilling. One of the coolest things that happened was the contributions by Brave New World, the comic store in Santa Clarita where Jacob buys his comic books. Portlyn, the owner,...

Kid Duplicate was designed by Jacob. He asked me to draw it for him. I just helped him achieve his vision as an artist. Before I started, Jacob chose the pose I should use and gave me diagrams of Kid Duplicate's accessories. Jacob colored it. Please help Jacob and Kid Duplicate beat CF! Donate today! http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067

May 3 is the Valencia Great Strides and there's still plenty of time to donate. Please check out our team page, watch Sophie's wonderful video, and consider making a contribution to ending cystic fibrosis. http://fightcf.cff.org/site/TR/GreatStrides/120_Southern_California_Los_Angeles?px=1769201&pg=personal&fr_id=2067 Aloha!

Last week was stressful, as the build up to Great Strides always is for me. The pressure of trying to make that fundraising goal, along with the preparations and the anticipation of friends and family coming together to find a cure for cystic fibrosis can become overwhelming. There were numerous times when I felt the spark to write. Each time this spark occurred something would come up. This is one week when I don't beat myself up over not being diligent about writing. This is one week when the only thing that matters is Great Strides. The walk was a great success. Our Valencia Great Strides had over 400 people in attendance and together we raised over $67,000 for the Cystic Fibrosis Foundation. Team Jacob raised close to $7000 and our family surpassed our goal of $5000! The walk day is always emotional for the families. You are quickly reminded at how large your support group is and how many people care about your family and your child. I always appreciate that my parents drive in...

Jacob has been sick all week fighting a nasty cold. He missed several days of school, but went on Friday when he seemed to turn a corner. Waiting around that corner seems to have been a wall. Yesterday and today he has had a squeaky cough that keeps him hacking all day long and into the night. Not sure how he's getting any sleep. Right now I can hear him coughing away. He complains that his chest hurts and I can only imagine how it must feel. When I get sick with a cold I actually get nauseous from the pain in my chest when there's nothing left to spit up, yet my body keeps fighting and making me cough. "Everybody gets a cold," Julie reminded me the other day, but I still worry. Hearing him like this makes me feel useless, the worst feeling any parent can have.  I just want to wrap him up and squeeze the germs out of him. I wish I had super powers to do that. Jake would really get a kick out of that. Last year Jacob seemed to be fighting the same damn cold for half th...

One of the downfalls of my writing nature is that the moment I get caught up in a project something else gets neglected. I began writing two new scripts in the past month and the blog took the hit. Sorry! However, I left with a strong post for people to mull over. Great Strides is less than a months away and I hope those of you reading this book blog will take the time to consider donating. Exactly what have I been up to? Glad you asked. First of all, on the book front, I've entered Basement Songs into a couple of indie book contests. Not sure how it will do, but I hope that those who read it might pass it along to a friend. I also continue to query about reviews for music magazines and blogs. Elsewhere, I've started the work on a new series for Popdose. It doesn't have anything to do with basements, but there is music involved. When it gets closer to the premiere I'll let everyone know. The scripts I'm working on have nothing to do with each other. One is a teen d...

Each year around this time, our family comes together to begin raising money for the Cystic Fibrosis Foundation’s Great Strides Walk. This is the annual 5K walk that serves as our big fundraiser to help find a cure for cystic fibrosis (CF). Our family has lived with disease for 11 years, ever since that December afternoon when my son Jacob was diagnosed with CF. When I say “family,” I don’t just mean my wife, Julie, our daughter, Sophie, and Jacob. I mean my parents, siblings and their respective families, Julie parents, siblings and their families, plus the hundreds of aunts and uncles, cousins, 2 nd cousins, best friends and distant acquaintances from years past who have all given what they can to help us in our battle. These people, all of them, are family in some way. How else can you describe these people who have shown so much love and support for Jacob and our family? With every new Great Strides campaign comes the task of writing a new letter asking people for money. Some year...

In the next day or two, I will begin my fundraising campaign for this year's Great Strides Walk in Valencia. We tried to come up with a new song for the Malchus family video, but each one chosen was either inappropriate, or Jacob nixed because he didn't want to "ruin" the song by having it become associated with CF. As Sophie will attest, these songs become reminders of what we're fighting for when we ask for donations. Because of past videos, Sophie can no longer listen to "Here Comes the Sun" or Springsteen's "Workin' On a Dream" because they make her heart hurt too much. For that same reason, we didn't use the perfectly suitable Bruno Mars song, "Count On Me." Jacob loves that track, thanks in part to its use in the animated film, A Turtle's Tale (a movie that his dad just happened to work on), and also because it's just a wonderful song. So, we chose to tweak last year's video (with the One Republic song ...

Hello again, It’s that time of the year when we once again reach out to our friends and family to help support us in our quest to find an end to cystic fibrosis. Each year, our family walks in Great Strides, the Cystic Fibrosis Foundation’s 5K Walk-A Thon, in support of our son, Jacob, now nine-years-old, and all people who suffer from this life threatening illness. As you may know, Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. Because of the illness Jacob, must sit through at least two daily breathing treatments and take an assortment of oral medications, including enzyme pills with each meal. We’...