Posts Tagged ‘Cystic fibrosis’

Basement Songs: Survivor, “Eye of the Tiger”

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Friday night, Julie took me aside to tell me the results of Jacob’s latest throat culture. Each time he goes toSurvivor an appointment with his CF doctor they shove a swab down his throat and test him for harmful bacteria. One bacteria they look for is Pseudomonas aeruginosa, a particularly menacing bug for people with cystic fibrosis that can create havoc on a patient’s lungs. To combat it the antibiotic tobramycin, or TOBI, is added to the daily regiment of inhaled medicines a CF patient must undergo each morning and night. This latest test revealed that Jacob is culturing Pseudomonas aeruginosa and will be starting a daily regiment of TOBI. Although he only showed a small amount of the bacteria, the news is still unsettling, another reminder of how helpless we sometimes feel in combating CF.

Soon after Julie gave me the news, the elephant returned. The elephant is this pressure I feel on my chest that takes my breath away. The elephant is always accompanied with his friend, the snake, who winds its way through my stomach and causes unrest. Joining them this time, for a limited engagement, was the sloth, weighing down on my back, making slouching on the couch in front of the television or curling up in a ball the only things I wanted to do. (more…)

Basement Songs: Bruce Springsteen, “Working on a Dream”

workingsingleEach spring when Great Strides rolls around and we begin fundraising for the Cystic Fibrosis Foundation, Julie and I do our best to write a letter that grabs people’s attentions and hopefully inspires them to make a donation. This is actually a pretty tough task. We want to convey how devastating cystic fibrosis is, yet still rejoice in the fact that our son, Jacob, is doing well. We want to share that although Jacob’s health continues to be good, living with the disease has really taken a toll on him emotionally this year. And while we are incredibly fortunate that Jacob is doing well, lives are lost everyday. Despite the medical breakthroughs being made each day, children and adults fighting for their lives are losing their battle with cystic fibrosis.

Last week, as we toured our daughter Sophie’s classroom for open house, hanging on the bulletin board was a paper she’d written in class about her greatest wishes. Included among her noble thoughts was this one:

“I wish my brother didn’t have cystic fibrosis. He has to do breathing treatments two times a day and take many pills. Sometimes he gets so sick he has to go in the hospital.”

These succinct, simple words by our beautiful 10-year-old daughter brought tears to our eyes, summing up what our entire family, both blood and extended, are feeling.

Back in December, I purchased the title track/first single to Bruce Springsteen’s latest. As the song has received regular airplay in our house since then, the words have taken on deeper meaning.

I’m working on a dream
Though trouble can feel like it’s here to stay
I’m working on a dream
Our love will chase the trouble away

I’m working on a dream
Though it can feel so far away
I’m working on a dream
And our love will make it real someday
(more…)

Basement Songs: Pink Floyd, “On the Turning Away”

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51xqt7bhqul_sl500_aa280_Through the eyes of my son, I’ve been reliving a part of my youth in the form of colorful costumed super heroes from cartoons and the pages of comic books. Because Jacob’s sister, Sophie, and his mom have no enthusiasm whatsoever for this stuff, he and I get to bond over the muscle bound humans out to save the world. With equal parts fascination and wonder, the two of us leaf through my musty old comics from the ‘80s and the glossy new ones we buy once a month.

My personal interest began as a child, around Jacob’s age, when my parents bought me the oversized graphic novel Superman vs. Wonder Woman. From that point on, I was obsessed with all of the big guns, like Spider-Man, Daredevil, and Green Arrow. But my favorite adventures always involved a group of outcasts, teens mostly: The Uncanny X-Men. In my teens, most of my X-Men comics were bought in a Convenient Food Mart located next door to the small music studio where I took drum lessons. In the time between when my lesson ended and when my father would pick me up, I would peruse the comic books held in a squeaking, turning metal rack in the back of the store. With any change I could scrounge from the sofa cushions or whatever I “acquired” from my dad’s dresser, my monthly does of mutant mayhem would always get snuck into the house and immediately taken to the basement, as if I were carrying a Playboy or something worse.

I’m unsure where this feeling that reading comic books was an illicit, depraved thing came from. Particularly in high school, when I was supposed to be poring over the works of Dostoyevsky, Faulkner and Voltaire, I didn’t want my friends to know I was more interested in Chris Claremont, Alan Moore and Frank Miller. Primarily, it was an escape, yet there were strong themes that I identified with, like brotherhood, loyalty, tolerance and redemption. (Ironically, many of these same themes were found in the novels I was reading by those classic authors I mentioned.) The comics also brought me comfort. In early ’88 I holed myself up in the basement to mope about a broken heart and listen to sad Springsteen songs. My one pleasure was delving into the X-Men saga “Fall of the Mutants.” In this epic story, Storm, Rogue, Wolverine and their teammates sacrificed their lives to defeat an evil spirit unleashed on our world. (more…)

Basement Songs: Bruce Springsteen & the E Street Band, “If I Should Fall Behind”

Five years ago I began a mission running marathons and half marathons to raise money and awareness for cystic fibrosis. I felt helpless. I felt that I wasn’t doing enough for my son, Jacob, in trying to find a cure for CF, and I believed that if I punished my body enough, people would take pity on me and make donations. I soon found that that it didn’t matter so much how many miles I ran, or how many months I woke up at 6 AM to go running — people would make donations out of the goodness of their hearts, because they wanted to help.

I decided to document my journey on a blog. The idea was to keep family and friends informed of not only my training progress, but to keep them up to date on Jacob’s health and to help readers to understand what it is like raising a child with a deadly illness. A longtime Bruce Springsteen fan (Julie would call me a fanatic—I wouldn’t disagree), I chose to call the blog IF I SHOULD FALL BEHIND. The title comes from a 1992 Springsteen song of the same name. To me that song represented the idea that should I stumble or fall, someone would be there to boost me up and set me back on course.

“If I Should Fall Behind” originally appeared on Springsteen’s Lucky Town, an album recorded in a burst of creative energy soon after the birth of his first child. The studio version is a gentle love song with a country flavor: acoustic guitars and drums with minimal keyboards. For the accompanying tour, Springsteen transformed it from its basic roots and turned it into a hymn-like celebration. It was the first of many incarnations the song took until it was fully realized in 1999. In ’92, each time he performed the song, Springsteen began it alone, strumming his electric guitar, placing the focus on the opening verse.

We said we’d walk together baby come what may
That come the twilight should we lose our way

If as we’re walkin’ a hand should slip free

I’ll wait for you

And should I fall behind
Wait for me
(more…)

Basement Songs: Coldplay, “Strawberry Swing”

I am running for my son.

That is the mantra I repeated to myself in times of exhaustion when I was training for my first two marathons back in 2003 and 2004. The early morning runs, the aching joints, the self doubt, all of these things played a factor in wearing me down and making me want to quit. But then I would repeat those six words to myself and I would find some buried reservoir of energy and continue moving forward.

I am running for my son.

The reason behind my sudden urge to run a marathon was raising money to find a cure for cystic fibrosis, the deadly disease that Jacob was diagnosed with when he was barely a month old. 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 causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. To combat the disease, Jacob must do daily breathing treatment with a nebulizer and a machine called “The Vest,” which vibrates his chest to break up any mucus build up in his lungs.

Additionally, he must take enzyme supplements to help him digest food. Jacob takes a total of 13 different medications daily to keep him a healthy little boy who loves to play with his older sister, Sophie.

After a two-year hiatus, a simple jog through a rain-soaked parking lot last Thanksgiving lit a spark in me to begin running again. Between 2003 and 2006, over $20,000 was raised for the Cystic Fibrosis Foundation through the marathon fundraisers I ran. The time felt right to make another go at it. New shoes were bought, a slow steady regime was adopted, and on November 16, I will participate in the Pasadena half marathon, just two days after Jacob’s 7th birthday.

This past summer, we visited family in Ohio and I stuck with my training as best as possible. The very first morning, as I cut a path through the memories of my childhood jogging through the neighborhoods where I grew up, an epiphany hit me. I vividly recall a Coldplay song chiming through my headphones and I had a clear vision of the future. Jacob and his loving sister, Sophie, were sitting together on a swing, reading, he with his head on her shoulder. They were older, in their teens, and the sun was setting behind them. In this vision, I stood, observing, feeling blessed for the wonderful life I have and the beautiful family I love. And it occurred to me, suddenly, that I am not just running for my son.

I am running for my family. (more…)

Basement Songs: The Beatles, “Here Comes the Sun”

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The call came in the middle of the workday, sometime after lunch. Julie was fighting back tears as she drove home from Jacob’s pediatrician’s office. What we had feared was confirmed: Jacob’s failure to thrive at one month old was because he was born with cystic fibrosis (CF). Here is the definition of CF from the Cystic Fibrosis Foundation:

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, and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

We were vaguely familiar with some of the CF facts after we brought Jacob home from the UCLA medical center. One of his doctors there had mentioned, in passing, that a CF test had been done, but for some reason it hadn’t. Immediately, we did some initial research on the disease, but not too much. Our son was home and out of intensive care — that was what mattered. “Everything’s fine,” we thought. But obviously it wasn’t. When Jacob failed to gain weight and his color continued to be very pale, our pediatrician became concerned. A wonderful, caring man, he wanted to rule out CF after we mentioned what the UCLA doctor had told us when he ordered a blood test.

I should’ve been there. That’s what I was thinking as I hung up the phone. I should’ve been there with Julie and Jacob when the test results were given. But I didn’t believe it was cystic fibrosis. I was optimistic it was a virus or something easily treatable. I should’ve been there.

(more…)