Today, hope

Greetings!

Today, I read something hopeful. It’s a blog post by an Australian with cystic fibrosis who writes about her health improvements after taking Kalydeco for the last 2.5 years.

The revolutionary drug addresses the cellular dysfunction at the heart of cystic fibrosis. The type of CF the writer has is not the same as Eli’s, but we hope drug combinations being studied currently will have the same positive outcomes for our lil buddy and his friends. There are 1,000 mutations of CF, but most people have at least one copy of the DeltaF508. Eli has two. In a way, this is really good; it’s getting the most attention in research. Fingers crossed that my son’s disease will be cured soon.

I also want to share really good news for the Oklahoma City Sooner Chapter.

The owner of my paper, Phil Anschutz, runs a foundation that has donated $25,000 to the Sooner chapter of our Cystic Fibrosis Foundation. It will go to support local research at the University of Oklahoma Health Sciences Center.

Thank you so much, leaders of The Oklahoman, Mr. Anschutz and those running his foundation for supporting this cause. And, thanks to the staff of the CF Foundation (Hey Celia I’m talking to you) for writing such a lovely grant proposal.

I sent thank you to everyone involved including a hand-written notes, pictures of Eli and some of the articles I’ve written about buddy boy and how his diagnosis has changed our life.

Listen: I’ve worked at places that wouldn’t throw $5 toward an employee’s cause.

We got $25,000.

Not bad. Not bad at all.

xo

To the cure!

Eli, cowboy
Eli, cowboy
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Little coughs, little panic, please go away

“Laila, is he breathing? What’s Eli doing?”

Continue reading Little coughs, little panic, please go away

Beauty, reality, Breath of Life

A gala?

This worried me.

Continue reading Beauty, reality, Breath of Life

Okla Home Grown Art for Eli

Artist Sean Vali happened to call the newsroom while I was working at night, when I answer the newsroom-wide phone line. We chatted about a story. And then I convinced him to donate art to benefit research that could save my son’s life.

Continue reading Okla Home Grown Art for Eli

Hearts and stars from Eli

There are so many people who have been nice to us since we had our little buddy. Yes, we wish he didn’t have CF, but he does, and it’s brought out the best in the people in our lives. We’ve also met new people who are lovely and wonderful.

Thanks for the Great Strides Illinois effort Chris & Carrie!
Thanks for the Great Strides Illinois effort Chris & Carrie!
Quite a few people I know have raised money for the Cystic Fibrosis Foundation. This is really important to us; a drug combination going into several trials right now could, if successful, help save Eli’s life. The drug combo would essentially force his cells to work properly, thinning out the mucus in his body that causes life-threatening lung infections.

I took a breather from blogging this week to try and hang out with my in-laws and catch up at work. Speaking of work, sorry, everyone I know, because I keep going on and on about my work. Two killer, and rare, EF-5 twisters as well as additional violent and deadly storms, tornadoes and flash floods down here in a span of three weeks have been all-consuming for me and everyone else on staff. The storms killed around 50, splintered giant swaths of multiple towns and injured hundreds of people. Besides helping out with storm coverage I finished my CF piece – a huge challenge for me personally and professionally. I’m not going to pretend I’m striking any kind of healthy work-life balance. There is no balance. I’m tired. I miss my kids. I don’t recall what my husband looks like…and what was his name again? I’ve gained at least five pounds in chocolate snacks. I hardly saw my poor visitors. We never even played cards. I kept falling asleep while trying to put the baby to bed. World’s worst host – right here! Thank you. Thank you very much.

Thanks auntie Amy, Mandy, Max and Lucy for your Great Strides effort.
Thanks auntie Amy, Mandy, Max and Lucy for your Great Strides effort.

Well, enough of my complaining. Thank you everyone who has been nice to us, and everyone who has taken the time to raise a little cash for research. It means so much to my family. And it means so much to my son. His future is bright because of your efforts.

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Great strides, great times

Mark, Laila, Eli and I did our first Great Strides Walk, a fundraiser for the Cystic Fibrosis Foundation.

I’ll say more later – gotta take a nap before I head to work tonight.

Below are our pics.

We ended up raising $1,000.

I was really happy with that for a first effort – thanks everyone! We are so behind on thank you notes. Forthcoming, I swear! This weekend…time off. Almost here!

I saw a lot of families that got really into it, getting sponsors, setting up lawn-chair camps, etc. Some teams had over 100 people walking. I met some cool people and can’t wait to learn more about them!

Everyone with CF wears a bracelet.
Everyone with CF wore a bracelet at the walk, which is actually done because CFers are supposed to stay six feet apart to avoid cross infection. Eli probably didn’t need to – he was covered up in his stroller. I just put it on because it was cute!

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