This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I walked under the understated purple Vertex sign and into the airy, modern corporation in Boston’s posh Seaport district with two goals:

  1. Attend a shareholders meeting.
  2. Ask a question to the CEO, Jeff Leiden.
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Vertex visit! Take 2!

First, I had to get past a company attorney, who asked me for the paperwork that proved I owned shares.

Then he asked if he could keep it.

This all felt familiar.A year ago, I sold a bunch of T-shirts to get to Boston, in the same airy lobby, with my little boy, then 3, and my best friend. We arrived at that lobby on Oct. I’d put Eli in a Hamilton costume for emphasis. He carried a 20-foot long petition we planned to unfurl in a dramatic flourish in front of Vertex executives. It had 125,000 John Hancocks, all asking the CEO, Jeff Leiden, to stop gouging our charity-funded cystic fibrosis medicines.

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Security, back then, also asked my best friend and me for our personal property –  drivers licenses.

“No,” we’d said.

Back then, in light of my petition, the company gave us a meeting with executives, but one person was missing. Jeff Leiden, the chairman and CEO of Vertex.

That bugged me, and I knew I’d be back.

My only goal with this latest trip was to look the man in the eyes and ask an earnest question, human to human, on behalf of humans.

I bought 28 shares in 2016, after my petition and first meeting got me nowhere. That’s peanuts to a $20 billion corporation like Vertex, but it’s plenty to get me into a shareholders meeting and hear from the man himself.

I’m grateful for this company. Its motto is “All in for CF.” It could legitimately cure my son’s illness. But ever since it announced the price of its first major discovery, Kalydeco, in 2012, at $376,000 per year, I’ve had grave concerns about how much it would cost for me for me to keep my little boy alive.

I donate to the charity that has given Vertex millions to incentivize its cystic fibrosis work, locking down $70,000 in grants an another handful of thousands from family, friends and supporters in Eli’s first few short years here. To say I support the cause is an understatement.

And yet, despite handing over a pile of cash for research, I don’t recall having any say in the final prices. I’m not sure the charity did either. I’m not sure any of us do.

It feels fundamentally wrong, not having any say. Not having any say has inspired generation after generation of American protesters, all the way back to colonial times.

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Sure, our lawmakers are, in theory, supposed to have some kind of regulatory authority over big corporations like this. But while it’s illegal to gouge a gallon of gas during a weather event in states like Oklahoma, where we’re from, you can gouge a drug made for a dying person without any hassle whatsoever from the government — local, state or federal.

It’s the kind of thing that makes you go hmmm.

It made a new advocacy group called Patients for Affordable Drugs go hmmm. The group is one of very few patient advocacy groups that takes no money from drug or insurance companies.

So, as a volunteer patient advisor for this group, which liked my style, I traveled to Boston again for the June 8, 2017 shareholders meeting. They paid my way. I didn’t have to sell T-shirts this time.

Now I’m selling them for a podcast. Ha!

Besides looking after my 28 shares and a major asset named Eli, I was also there to listen to what that a group called the Interfaith Center on Corporate Responsibility would have to say. One of their reps would be at the meeting too, trying to push Vertex to disclose what it pays lobbyists.

I liked their style.

First, I had to get in.

Standing there in the lobby, at a desk topped with a few neat rows of plastic shareholder name tags, I produced from a manilla folder a legal proxy, a document I’d secured from my broker. It stated the shares were in my name. I’m not sure the lawyer expected me to have that, but I did.

I told the big bad tough guy lawyer he couldn’t have it.

Up the elevator I went.

I walked into another modern room awash in window light.

It was smaller than a classroom and full of well-heeled employees.

A number of them had a staring problem.

Nothing menacing. I sensed curiosity.

I mean, last time, I had a kid in a costume. Maybe they thought I’d show up as Abigail Adams or something, I don’t know.

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What’s this poor kid’s mother going to think of next?

I’m telling you — more people attend my daughter’s PTA events than this!

Did anyone in this teensy room even have cystic fibrosis?

I wasn’t sure, but somehow, I doubted it.

As I took my seat, the man who said he’d been appointed chairman of the meeting handed me a sheet of rules.

I tried to remember what I wanted to say. At 9:30 a.m., the meeting began. I think there was a brief intro from the emcee.

Quickly, the agenda moved along to the shareholder presentation from the ICCR rep. She walked to the mic to make her case.

She had just two or three minutes to do that, per the rules.

Her group had submitted a proposal for shareholders to vote on that asked Vertex to disclose what it pays lobbyists. The proposal has been  part of a wider 2017 effort; ICCR members challenged 11 U.S. pharmaceutical companies and six foreign ones with resolutions like this one. The hope was that Vertex, as a major force in pharma, would take a leadership role in expanding disclosure around its drug pricing strategies.

“In our view, corporate boards of directors have an obligation to oversee strategic decisions regarding pricing to ensure they do not present undue risks for shareholders, patients and providers alike,” the group wrote in a letter to 17 companies, including Vertex. “Without adequate transparency around these strategies, investors cannot hold directors accountable for decisions that may have sweeping and long-term implications for the business and its many stakeholders.”

I liked the idea. Transparency is like bleach to big, opaque entities, whether you are talking about the federal government or big pharma.

Big transparency fan over here. Shine a light. Lift a rock. Show us your documents, sexy.

The board, chaired by Leiden, who is also the CEO, recommended shareholders vote “against” disclosing what it pays lobbyists to shareholders.

(I used my big 28 shares to vote “for!”)

I knew the conclusion of the ICCR’s presentation would mark my first chance to ask a question as a shareholder, and hopefully not my only one.

I hopped up and got in a real obvious one.

I walked to the mic and said:

“Why don’t you disclose what you pay lobbyists to shareholders?”

I remember a vague line of reasoning from the emcee and the promise that they’d get better at it.

But, he pointed out, shareholders had sided with the board – chaired by Leiden, who is also the CEO. Shareholders voted it down.

I sat down.

In a blink of the eye, it was time for any other audience questions.

Man, this emcee talked fast. This cat talked like that guy from the MicroMachines commercial!

My only other chance to address the board of directors and executives as a shareholder had passed me by in an instant.

I shot up my hand and let out a little cough, lest he overlook me.

“Ahem!”

I got my chance to speak again.

This time, I asked about a very ill boy who has been waiting for two years for Orkambi, another great discovery that costs the equivelant of an OKC house a year (maybe a Boston parking space), one that Eli isn’t old enough to take yet.

The boy, Lucas, is severely malnourished. His weight makes him vulnerable to lung infections. He is hospitalized all the time. He’d rather be outside, playing with his friends.

He’s from Australia.

Borders don’t matter to me. I see the cystic fibrosis community as one big family.

Well or sick, we are all tumbling toward the same fate  – death! The end! Buh-bye!  People with cystic fibrosis are heading there much faster than most of us.

I’d read in my shareholder materials that the company had reported a billion and a half cash on hand.

It could improve Lucas’ fate. Maybe it could save his life.

Surely, they could do something for a kid like him.

That brought me to the one question I had come to ask.

Here it is:

“How do you justify the  neglect of this child?” I asked Mr. Leiden, the chairman and the CEO.

To my surprise, he walked to the mic. Unlike some of his employees, he hadn’t turned around and looked at me before then, but he was looking at me now.

I listened as he said my son’s name.

Eli.

Vertex wants to cure the disease, for Eli.

The company is working extremely hard.

I appreciated his words.

In the fog of polite confrontation, I hope I remembered to say so.

He hadn’t answered my question.

And so I told him, he hadn’t answered my question.

I repeated it.

“How do you justify the neglect of this child?”

Lucas could be Eli. Eli could be Lucas.

Lucas may be far away, on another continent, suffering in the shadows, but to hold out on him for two years means the company would have no qualms holding out on my kid, either.

Each little life is precious. Each little kiddo deserves a chance to give these wonderful, charity-funded drugs a go.

“Thousands of children like Lucas will never see these drugs,” I said.

Leiden had taken a seat. I still stood at the mic.

The meeting emcee told me if I kept pushing, I’d be removed.

My only regret is that I said “Thank you” and sat down.

I glanced at my phone on the way out. 10:05 a.m. The meeting was over in 35 minutes.

I should have kept pushing.

I will never stop pushing.

 

 

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I am in Boston tonight, a new shareholder in Vertex, the drug maker that could cure my son Eli’s deadly illness, cystic fibrosis.

At what cost?

So far, the drugs it has developed cost anywhere from $286,000 to $376,000 per year. The company priced our drugs this way after taking untold millions of dollars from the cystic fibrosis community.

Those prices are a betrayal. Of course, we’d pay whatever it takes to keep Eli alive. The sick make easy extortion victims, and drug companies know it.

I  bought stock to have some say in how this company is run.

If you care about how the company is run, you should also buy stock.

So far, I voted in favor of a shareholder resolution that would force the company to disclose what it pays lobbyists.

The board wants to keep those numbers secret?

Why? What’s with the secrecy?

Tomorrow, at the annual meeting, I hope to find out more.

With our country’s few real protections for the sick at risk, there’s no guarantee that when Eli needs those expensive drugs a few years from now, he’ll get them. Far less expensive drugs and procedures have wreaked havoc on our lives in his four short years here.

That’s not his fault.

We are all to blame, for allowing the medical systems in place to save him to run all over the sick and their caregivers, financially, just because illness is in the picture.

This latest effort comes on the heels of a semi-failed one. I tried to do something with my opposition to the latest drug costs by giving a speech and launching a petition that asked the leader of Vertex, Jeffrey Leiden, to stop gouging our drugs. It has 130,000 signatures. The company met with me. Since that October meeting, Vertex hasn’t changed a thing.

More discoveries have come about. More hope.

More terror that the cost of those drugs will be ruinous.

The line that “they have to cost that much” is tossed around a lot. I’ve seen no data to back up those words.

Here’s a line for you:  Vertex is extorting the dying.

You may be thinking: So what? Quit whining.

Would you say the same thing to Lucas’ mom? He’s an Australian boy, severely malnourished, frequently hospitalized, lungs deteriorating more by the day, who has been waiting for Orkambi for two years.

Why should it take so long to get a dying child a drug that would be like a life raft?

Answer: It shouldn’t.

There is no excuse in the world to justify his needless suffering.

Stories that trickle my way also come from the U.S.

Like the mom whose private insurer refused to cover Orkambi. It had worked so well for her child, but to keep it, they had to switch to a government plan. This family is kind, smart and and extremely hardworking. Almost no one can afford a $200k+ per year drug. So now, taxpayer, the kid’s extreme drug costs are your problem. She’ll need this $200k/year drug for the rest of her life. The programs funding it are now at risk, too.

Other reports entail employers telling employees to get outside insurance in order to keep their jobs. Kalydeco and Orkambi are just too expensive. Businesses and individuals alike are scrambling.

As far as I can tell, most people are too busy, ashamed or too afraid to pipe up about these problems. I can appreciate that, but at the same time, as a storyteller, it frustrates me to no end. Nobody wants to use their name.

Silence is a problem. With silence, problems go unacknowledged. Nothing ever changes.

And – in a lot of cases – I’m too busy playing rapid-fire CF mom catch-up to think to ask.

I’m asking now.

Please share your story.  Your voice is powerful.

The group that sent me to Boston, Patients for Affordable Drugs, takes no cash – not a dime – from Vertex or any other company.

They are independent, and they are collecting your stories.

Please do not be afraid.

Speak. Here is where you can deposit your story. 

Remember: Buy Vertex stock. 

I hope to see some of you next year, in Boston.

 

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Eli came with me to Boston in October 2016 to have a meeting over high drug costs.

 

I got an e-mail announcement from one of those e-card sites.

My mom’s birthday is Feb. 6. Today.

She died in 2010. Cancer. (Yes, f$%^ cancer) It makes sense that the company sent a reminder. The entire reason I sent an e-card had to do with my lacking skill in birthday date recall. Thus, rather than the mail, I had to go electronic.

Gayle

Gayle, kickin’ it from the great beyond since 2010. She’s got your back 24/7.

In grand tradition, I nearly forgot it again this year. Feb. 6.

More than six years after her death, what is her birthday, to me?

It meant that my dad sent my sisters and I a text. He put new flowers and a “Happy birthday” balloon by her gravesite. He noted the balloon kept trying to run away, so he affixed it to the ground, somehow. He sends seasonal text pics of her grave.

My dad remarried in 2016. I’m happy for him. I’m happy he’s found someone to care for, and to care for him.

Of course, I still miss my mom. I wish she were here to know Eli and Laila.

We were so close I called her every day. That relationship hasn’t been replaced by a new one.

It’s just gone.

Poof.

But I have a family now. And we have each other.

And I should acknowledge that I lean on my sisters during various life crises. And I share with them good news that I’m excited about. And they’re excited too. So’s my dad. Maybe that doesn’t match what I had with my mom, but it comes close. Close is good. Close is not so terrible.

Tomorrow I’ll work hard at my job. I’ll come home and we’ll work to keep Eli well.

Tomorrow I’ll drink a Diet Dr. Pepper. I’ll visit T.J. Maxx, because – hashtag – though she died before hashtags took over – #neverpayretail.

Maybe I’ll think of the perfect comeback 26.987 minutes too late, but I’ll mutter it to myself anyway, feeling clever and satisfied nonetheless.

I’ll have a laugh. Have a drink. I’ll live life.

She shaped where mine has gone. She pushed me to get an education so I could take care of business.

She never spelled out why. My guess is that she wished for me more freedom than she had, when she dropped out of college and got engaged to my dad after knowing him for four months.

Her career choices were limited. She went where he went. I get the feeling she just wanted her daughters to have more of a say,  and a good paycheck, a future than she did. Choices.

My parents struggled financially while we were growing up. Not so much that anyone would notice. I say “struggle” and it’s kind of laughable. It’s like – we struggled compared to the country clubbers that pervaded my town. We always had a roof, a Thanksgiving turkey and a Christmas ham. When times were good we trucked it to Disney in Florida.

As a teenager I got jobs and earn my keep. It taught me to be self-reliant. If I wanted spending cash,  and later, rent money, I got a job.

My mom and my dad let me bump into choices rather than pushing me this way or that.

My mom danced at the grocery store sometimes.

My mom and Laila

My mom and my daughter, Laila, who was two months old here.

My dad had this stunning track record of getting her Christmas presents she hated. One of them was a gaudy, floral robe from Victoria’s Secret. Not sexy , mind you- it was like ‘1980s does victorian-floral.’

She put it on, then waltzed down our staircase, declaring,  “Frankly my dear, I don’t give a damn,” before turning away with a flourish. The robe was never to be worn again.

I always felt my mom contained this well of untapped potential. She could paint. She got crafty in the 1980s and painted all of these beautiful pieces on wood. Flowers, mostly. Time after time, after I was grown up, I’d encourage her to take an art class. I would chase down rec-ed brochures and circle the classes she should obviously be taking to nourish her undeveloped artistic abilities.

“Why?” she’d say. “I’m not any good.”

I didn’t get that.

“Yeah, mom, actually you are.”

She never took a class or got back into painting.

My grandmother died in 2006. I barely knew my mom’s family. We traveled to Louisiana to put grandma to rest.

My grandfather, at the house in Louisiana, kept insulting my mom. Everything out of her mouth frustrated him. Her every question was a stupid question.

It took that for me to get it- why she had no belief in herself.

She never said one bad thing about her father, ever.

Only things like, “He’s a little rough around the edges, but he has such a good heart. He loves animals.”

The funeral trip marked the first time I saw my mom as a real-life human being. I was 26 at the time.

It’s the first time I found her remarkable.

Remarkable because, while she never talked about her childhood, I could imagine it, her self-esteem decimated by her father’s disapproving words over many years.

She met my dad.

She got out.

She had a baby named Joanna in 1972. That baby lived for several days. Then Joanna died.

Mom overcame that, stuck with my dad despite what must have been incredible pain and grief, and had three more girls.

She turned around and raised us to believe in ourselves. She never fully believed in herself, but she believed in us.

We are all alive and well today. We have husbands and kids of our owns and careers and friends — happiness. It’s not perfect, because life’s not perfect, but when times are good that happiness is round and full.

It’s her birthday.

She would have been 66 today.

We’d have wished her a happy 29th.

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Our relatives from the frozen North like to visit us and defrost during the winter months.

Here’s a photo highlight!

I gave all the girls 40s hair, because, well , – why not?

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Laila tolerated my impromptu beauty salon only after witnessing cousin Nicole as guinea pig.

The plains weather drops and rises, drops and rises. On a cool and gusty day we headed to a favorite spot when the weather gets testy. The science museum!

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Hair twins

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Laila gives this dino the what-for.

A new dino exhibit captured the kids’ imaginations. Animatronics have come such a long way since “Pirates of the Caribbean,” (which I still love. #disney). Eli feared the life-like dinos and worried our family would be eaten in short order.

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There’s just something about sand spinning on stone…

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Auntie gets into the science.

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We watched Eli “play” basketball. He runs up and down the court. It’s great for the lungs!

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The Oklahoma bombing memorial remains a beautiful, quiet place. Except for those moments when my kids  destroyed that peace with piercing  banshee shrieks and required a lesson on sanctity for the dead.

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Our morning outing entailed the memorial. Cousin Nicole took notes with a sparkly pink pen.

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I wish, kids.

I had to pump the breaks on writing here to finish up a big project at work that requires all of my attention. And I needed to think about where I would be putting my energy in 2017. The months of September through January kept us on our toes with Eli. Three rounds of antibiotics failed him as he fought a cystic fibrosis flare-up. Finally, Cipro – strong enough to kill anthrax!- got the job done. He lost weight while fighting his illness and we are now focused on fattening him, as bigger kids have better luck handling his illness over time. We have our fingers crossed that we’ll get through the winter without a hospitalization. Winter’s not over yet. His illness management is a part-time job on top of my full-time job and other neglected life duties, like this blog, and the laundry.

Anyway, I miss writing here. When I quit I could feel the stress build – this is one of my favorite releases! I have some 2017 ideas. We’re going to keep on trucking. We’re going to keep on having lots of fun. It’s still good to be alive, in conclusion.

Hello! We are going to hit ‘unpublish,’ but only for a while.

I’m not sure exactly how long, but no worries, we will be BRB

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I need to organize my categories and the space a bit better!

We’ll be back in 2017 and better than ever before!

I’ll be taking on pharma and highlighting the stories of the oppressed (what did you think, I was going to bake?), all while providing the occasional family adventure story and updates on buddy.

Thanks for your love, ya’ll. We will see you again soon.

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Funny, I thought my co-pay for my son’s latest antibiotic would be around $30, the usual.

It wasn’t.

Will a $105 co-pay send us to bankruptcy court?

No.

But WTF?

When you’re sick, you get over-charged.

Were we?

I decided to get to the bottom of it.

My first step? An e-mail to my company’s HR department.

Stay tuned for the next episode of…Medical billing mysteries…

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I tried really hard to be pathetic.

I poured a glass of wine that was more like 1/3 of the bottle. I got under the thickest, warmest blanket we own in bed and called my sister to cry.

Not my proudest moment, perhaps, but every human has license to be ridiculous now and again.

What set me off was the news that Eli had a plug of goo in his lungs keeping his upper left lobe from fully expanding. It’s called atelectasis, and the official definition is “complete or partial collapse of a lung.”

WTF?

Because the last time I checked he just had a cough. 

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We be coughin and playin

We got test results back from his clinic, including an X-ray, nasal sample for viruses and throat swab to check for bacteria living in his throat, which suggests it is also living in his lungs.

The X-ray showed “appears to suggest” atelectasis, according to his clinic coordinator Debbie. (Hi, Debbie!)

What I’ve gathered is that next, instead of going straight to IVs, we try a new, stronger antibiotic at home (cipro) and do a lot of extra airway clearance since atelectasis can take a long time to clear up – weeks, or months.

He does not have a bad cold virus nor any new alarmingly named bacteria in his lungs.

That was a huge relief, as there are several bacteria strains that can really hurt him. These strains are found in common places, like the faucet, damp piles of leaves – in moldy onions, for Pete’s sake. They will not hurt people with regular lungs, but they could devastate Eli’s ability to breathe.

So if you see me sprinting like an insane person to stop Eli from drinking from a drinking fountain or from jumping in old leaves, now you know why. Pseudomonas is why. B. cepacia is why.

Atelectasis (WTF). That’s a new one for us from cystic fibrosis. I don’t react well when his disease surprises us. I’ve learned you’ve got to let the sadness play itself out.

So there I was, on the phone, tearfully explaining this latest development to a sympathetic ear, when Eli and Laila ripped into the room like a coupla EF5 tornadoes.

Ugh, kids. Can’t you just let mommy be pathetic and ridiculous alone?

“WHO ARE YOU TALKING TO MOMMY? WHY ARE YOU CRYING MOMMY?” demanded my son. “WHY DO YOU HAVE TEARS MOMMY?”

They successfully hijacked the conversation with my sister, who started asking them about what they wanted from Santa. As Laila offered a list, in great detail, Eli body slammed me.

“Buddy – the wine. The wine!”

“Oomph. Eli. Really. No more body slams. OOMPH.”

The interruption curtailed my pity party.

The wine sloshed onto the sheets.

Eli managed to simultaneously shout out Christmas list while slamming me like a 36-pound wrecking ball.

I stifled a laugh. Wait a hot minute….I’m supposed to be in the depths of despair here….

Hey – what’s this…My wine glass …it’s …it’s…half full…

WTF?

It took body slams and a f ew days of perspective on our latest turn with bud’s disease to banish the sadness and bring clarity.

His cough improved after days of breathing treatments and 1.5-two hours of shaking vest. We did as much manual patting per day on the spot giving him trouble, that upper left section of his lung, that we could get away with.

We kept him home from preschool for a week just to get a break from germs.

Mark took three days off in addition to his Thanksgiving break to care for Eli. I’m really glad he could do that. They were both really ready to get back to their routines today. Eli missed school. His classmates missed and worried about him. Mark was slowly, steadily losing his mind (no offense, little buddy!).

Keeping Eli home doesn’t make sense. Let’s face it – germs are everywhere. We live in a big wide world of germs, and I’m not raising Bubble Boy.

We went to fill a liquid version of Cipro and learned from Walgreens it is on backorder until February. WHAT? Working on finding the antibiotic today. (UPDATE: Found)

I hope it works, because it is his fourth round of antibiotics since September when he started hacking.

What if it doesn’t?

I turned that  scenario over in my head. You know, if we have to hospitalize Eli – is that really the worst thing that could happen?

No.

Because modern medicine.

Mark told Eli last night he has a frog in his throat and tadpole in his lung. Eli seemed pleased to envision amphibians stuck in his body.

“That’s why we’ve got to pound on you and you do your medicines,” Mark told him. “We’ve got to get them out of there.”

“OK, Daddy.”

Eli drifted off to sleep vaping albuterol and dreaming of tadpoles.

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Today’s the day. Everyone is asking for a handout!

That includes me!

Donate here.

It’s Giving Tuesday!

Here are 5 ways to give:

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Sickboy

I discovered a podcast. More specifically, my pal Marquina discovered a podcast. She is only a year older than me –which makes her, what, 29 maybe — and she is a cancer survivor. And she mentioned she was at this camp for adults who have overcome stuff – like cancer – and she met a man named Jeremie. He is 32 years old and has cystic fibrosis. He also has a great podcast called Sickboy he’s put on with his best friends. It’s hilarious, vulgar and inappropriate. In other words, it’s everything a podcast about sick and dying people and destigmatizing illness should be. Seriously, though. Sometimes life gets so absurd, you just have to laugh. Humor is medicine. It’s definitely Jeremie’s medicine. And if he is alive and thriving at 32 with my son’s fatal illness, I’m willing to dose on that.

So you should donate to Jeremie’s podcast. You can even give a small amount a month – like $1 – which is pretty exciting.

Bonus: Canadian accents

Esophageal Cancer Action Network

One in five people diagnosed with esophageal cancer will survive five years.
It’s a depressing statistic, and one I know well. My mom died in October 2010, just one and a half years after her diagnosis with this cancer. Luckily, she got to meet my baby girl Laila. We said goodbye when Laila was just six months old.

We had no idea that acid reflux can cause cancer. It’s something my mom suffered with her whole life, but we never even thought about getting her an upper endoscopy, a procedure that could lead to early detection and be lifesaving. More people should know this, and that’s what ECAN is all about.

You can give once or schedule a recurring donation. Easy like Sunday morning.

Foster Wishes

There are 11,000 foster children in the state of Oklahoma.

They need Santa, too.

Foster Wishes is my favorite charity in the Sooner state. My family adopts a child every year.

There is so much yuck gross commercialism involved in the Christmas season – why not give to a little person who would appreciate a doll or truck more than any little person on this planet? My colleague’s sons are adopted. They had a handful of McDonald’s toys to their name when he took them home – you know, the kind you shovel in the trash when your kids aren’t looking.

If you are local, you can request a Christmas list from a child and drop the toys and goods off at a local spot. Or, you can donate online.

Miracle messages: Because everyone is someone’s somebody

This nonprofit began when its founder took a walk on a San Francisco street at Christmastime and asked every homeless person he met if they might like to record a video message for a relative or loved one. A man named Jeffrey took them up on the offer. His video was posted to Facebook. Within an hour, they’d found his sister, which led to a phone call reunion after 20 years apart. Jeffrey had been listed as missing for 12 years.

There are a variety of ways to get involved, from contributing to a crowdfunding campaign to starting a local chapter. Read more about the org at its website.

Help me be your corporate gadfly, baby!

You didn’t think I’d let Giving Tuesday go by without begging for cash myself, did ya?

It’s true – I’m raising money. I’m raising money in my personal life, and online, to purchase stock in Vertex, the flagship drugmaker that holds the power to save my son’s life and/or bankrupt him and/or his family.

The latest drugs that can help Eli cost more than $250K/year.

Donate here.

If I hold $2,000 worth of Vertex stock for one year, I can propose plans at the annual shareholder meeting in Boston related to areas of corporate governance.

Don’t fall asleep, listen: Shareholders want companies to do well, just like I want Vertex to succeed and thrive. It’s just – the company needs to be accountable. I had this meeting with them in Boston and they weren’t accountable. This is one way to make them more accountable.

I’d also really love it if you, right here, right now, took $1, $10, $25, $50, etc., out of your tin can hidden in the wall, or, your bank account.

Next, put it white envelope and write on that envelope “Vertex shareholder cash.” Or, stick it in your savings account.

Then stay tuned, because I’m going to teach you (and myself) in 2017 to be a corporate gadfly. We are going to form a coalition of shareholders who will look out for the cystic fibrosis community by keeping an eye on the companies producing Eli’s drugs. No one is going to do this for us, don’t kid yourself.

Nearly every patient advocacy group out there is tied up with drug company money. Think about that as you listen to the thundering silence of those “advocacy” groups on our drug costs.

Keep reading this blog. Keep stashing money in your special Vertex boot.

Keep keeping on. Don’t give up.

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Eli won’t give up.

Donate here.

Any cold Eli catches can flare up the gunky stuff his lungs hold. It is called a “CF exacerbation,” which is, basically, a bacteria party in Eli’s lungs.

That is what happened in September, and then October, and again, potentially, in November.


We’ve reached 60 days of hacking and counting after three rounds of antibiotics. The meds would appear to work, Eli would get better, and then, sicker. He’s been off antibiotics for about a week now and doesn’t seem to be getting better.

It all sends me into periodic moments of despair. I’m stuck in one now.

I feel like I’ve somehow failed him. Like – maybe we should have pulled him out of school for a week. Or I should have enrolled him in a sport by now to boost his lung strength. Or hooked him to his shaking machine for more hours of torture. Or started cooking anti-inflammatory meals sooner than a month ago.

And then I think…You have no vacation or sick time left and need to save your salary for larger medical events, for which unpaid FMLA won’t cut it.  Mark’s teaching schedule means Eli can be home later this week for a Thanksgiving break, and around Christmas, too, for a break from the preschool germs.  And as painful is it is to watch his colds stick, he needs to catch them to develop his immune system. Hey, you –  he is just 3, too little for most sports, and you run and play all the time in the fresh air with him, until he plops down on the sidewalk and claims he is “running out of power.” You took him to swim class. He refused to let you leave him with the instructor, screamed bloody murder and chased you to the bleachers before you gave up and took him home early because he didn’t want to be there. And are you not about to enroll him in both winter basketball and spring hockey now that he is a little older? And at least you care about nutrition, you!


My mom guilt ghost haunts me, never far away. All I can do is push the negative thinking aside and focus on what we can do next for Eli, instead of how we have failed him.

I’m taking him to see the doctor tomorrow, and in the mean time, collecting a poo sample from him. The method would otherwise be a prank -plastic wrap over the toilet bowl is apparently how you get that done. I shall next take that encased poo, place it in Tupperware and transport it with us. Oh, joy. His clinic is testing him for C.diff because he has the runs. C.diff can happen when antibiotics inadvertently clear away your good gut bacteria, and I am hoping and praying Eli does not have this, because that would be serious.

They are also going to swab him to see what viruses or bacteria are lurking about in his lungs.

We in the mean time added the unsexily-named postural drainage to his routine, in addition to his shaking vest, breathing treatments, enzymes, Culturelle and vitamins that he takes. That means Mark or I will pound on him for an extra half hour with cupped hands or rubber cups while putting him in different positions, all designed to get him to clear infected gunk out of there.

We gave it a go over the weekend, and Eli tolerated the therapy and goofed around with me while I tapped on him.


Then he broke my heart.

“Why are you doing this too me, Mommy?”

“You have a disease called cystic fibrosis.”

He paused thoughtfully, then turned and asked, “Is it bad?”

What could I say to my baby, my inquisitive, rowdy little bruiser with dimples and curls, as I tapped him with blue rubber cups on the carpet Saturday morning?

“It’s – it’s just a disease,” I said, shrugging. “It’s just a disease, buddy.”

It’s been a bitter and divisive year.

The cards have fallen. The votes are in. You may be celebrating or mourning today, and that’s beside the point.

Let’s all wash our hands of this brutal election season and move forward.

Then, literally – wash your hands. More!

Eli is my platform; his health is at the heart of just about every move my family makes.

Here’s my point: My son caught a cold. The virus jacked up the bacteria that live in his lungs. He started to cough. He’s on his third antibiotic in 50 days. It’s no one’s fault; that’s just how it works with him sometimes.

On the Friday before Halloween, the night of his preschool’s fall festival, I looked and him and realized the spunk had exited his eyes, which were gooey. So was his nose.

That night, he wore his Hamilton costume (of course he did), and he was very tired, slogging from room to room to play games and win candy. And when his level of enthusiasm in the face of candy drops — it’s serious.

A half day before I’d thought “We kicked it.”

I was wrong.

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The last time he went from almost-better to gooey, hacking and subdued, in January, Eli landed in the hospital for five days pumping a trifecta of antibiotics through an IV.

At the time, I was impressed that, even in that state, he dug deep and rallied; it took a team of four to hold him down and collect a pee sample. He bitterly recalled the incident for months afterward.

“They took pee pee from me!” he’d yell on occasion, grabbing his diapered crotch for emphasis.

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Take my pee pee? Prepare to die.

Eli has good care; I called an on-call pediatric pulmonologist at OU Children’s in Oklahoma City Saturday Oct 29, who picked up right away and switched him to Cefdinir, his latest antibiotic.  The lung doc said to call if he gets worse. Eli started getting better. His goo-eyes got bright again. This medicine appears to be working, but his health can turn at any moment.

He’s been doing three  breathing treatments and an hour to an hour and a half on his vest per day for 50 days now. It’s a lot of work to keep Eli well, but we are willing to put in the elbow grease. He is worth it.

Hand washing is a basic tenant of good hygiene, but when you wash your hands, rest assured you are also doing something kind for people like my son.

He doesn’t look sick, but his body can turn on him on a dime.

Regular soap and water, scrub scrub scrub, “Happy Birthday” in your head twice, and you’ve done a proper and appreciated kindness for the chronically ill, whose diseases are often invisible.

I thank you for your consideration.

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