TV news crew visits house, Eli refuses to wear pants

Panic strikes as I remember my make-up is in my gym bag at work.

There is knock on the door.

It is a TV reporter and cameraman.

My son is eating cereal in his diaper.

The TV reporter and cameraman enter.

Eli sees them, throws himself on ground and refuses to wear pants.

So began our little dispatch on the petition I made to stoke public discussion on the high price of charity-funded drugs made to help my pants-less fellow with cystic fibrosis.

My lady reporter friend Rachel Calderon reads my blog (Hi Raaach!)

She’s always up on social media looking for interesting stuff. Last year, due to my blathering on about trying to figure out personal finance in the face of chronic disease, I served as her every-mom in a different report. Still trying to figure that one out, personal finance plus chronic disease.

Turns out it’s hard for people to go on camera and admit life’s a struggle, man, because Rachel had a real hard time finding a subject.

But, life’s a struggle, man.

That struggle is why I started my petition. That’s why Rachel came to my door again.

I found make-up in a corner somewhere. Eli put on overalls-with great difficulty. 

My protest is a pre-emptive strike on the struggles of future Eli.

Do I know that my insurance company will approve of future lifesaving drugs when current medications are being priced in the hundreds of thousands per year?

No.

Do I know if my son will be subjected to co-pays in the hundreds or even thousands of dollars and need multiple medications priced as such to stay alive?

No.

Do I know if he will have to choose between food and drugs, as the chronically ill do, or between bankruptcy or death?

No.

Those are the stories I’m hearing as thousands and thousands of people sign my petition and leave messages of support.

Stories like that. Bankruptcy or death.

It’s like the game we used to play when we were children:

“Would you rather – be eaten alive by a bear or drown in a sea of tapioca pudding?”

WTF? I was an odd child.

The stories – bankruptcy or death?- are the stuff of my nightmares for little Eli.

No, I can’t say how it’ll go for future Eli. But I can say that I don’t like the way things are going, with new drug combos from Vertex priced in the hundreds of thousands of dollars for one year’s worth of pills, those very drugs funded by millions in charity dollars funneled into science from CF patients, their friends and families.

Then there’s this story: A CF doc named Brian P. O’Sullivan with The Children’s Hospital at Dartmouth-Hitchcock in New Hampshire told me Orkambi – a drug priced at more that $200K/ year – is packaged in 28-pill packs, meaning patients have to buy 13, not 12, times per year.

There aren’t 13 months in the year.

So, what, are drug companies creating ghost months now?

An extra payment is a pretty big deal if you are an adult patient who pays a $500/month co-pay on a month’s supply of Orkambi, like one of Dr. O’Sullivan’s patients. BTW, that adult CF patient paying the $500 is one of a set of twins with the disease. The other twin Dr. O’Sullivan sees pays a reasonable $30/month!

I can say that I found out dying kids in poor and/or small countries aren’t getting cystic fibrosis drugs. In some places kids are still dying by 10 or 15, and I can say that that bothers me.

No one seems to care about dying sick kids from obscure countries we know only as vacation destinations or something we learned about in 7th grade geography.

I wrote a column about a 14-year-old Chilean schoolgirl with cystic fibrosis who begged on YouTube to die by euthanasia in February. Her father, who works in the lab of a chicken farm, relayed to me that he tried to move to the U.S. to help her in the mid-2000s but authorities told him “No.”

By the springtime Valentina Maureira strained to stay alive through quick, shallow pants.

“Help,” she said.“Help. Help.” Those were Valentina’s last words. She died May 14 of the same genetic illness my son carries.

Vertex began as a small biotech company. The company grew along with amazing discoveries that have helped extend the median age for people with CF from early childhood to 42 in the U.S.

In my petition, I highlighted windfall compensation packages Vertex executives have swung for themselves after brilliant minds working under them made a blockbuster drugs funded by patients and their families and friends. Kalydeco was approved in 2012, the same year Eli was born. It thins out the body’s mucus, literally correcting the genetic defect at the cellular level for a small number of patients with CF. Next came just-approved Orkambi, which stands to help those with a more common type of the disease, like my son, by bumping lung function by 3 percent. The price ranges for these charity-funded discoveries are $259,000 to $376,000 for a year of pills.

In 2014, CEO of Vertex Jeff Leiden took home nearly $46 million.

I can say I find that deplorable.

I can say that I hope the last words of the now dead schoolgirl ring in his ears:

“Help. Help. Help.”

I can say that they probably don’t.

Forty six million in a year? How’s about you dice that up and kick it on out to all the CFers for whom the discoveries have come too late, who are desperately campaigning for money for new lungs?

That’s another reason I did this. I’m just sick of it all.

I’m sick of the desperate pleas for help paying for overpriced medical treatments and procedures and drugs. To be clear, I’m not sick of the people making them, I’m sick to my that they have to campaign for cash to pay for what they deserve-life.

It boils down to greed on the backs of the sick and dying.

I know research and development is expensive. But show me the numbers that justify these prices. Show me the profit margin on a $900/day medication like Kalydeco.

Yeah, you can say “but kids in U.S. get the drugs!” via insurance companies, state aid or grants, or some combination – but do we know that this arrangement will last?

No.

Governments are strapped for cash. Tax payers are strapped for cash. The middle class is strapped for cash.

Our wages are stagnant and in cases like mine even going down as health premiums rise.

Why are premiums going up? Why are deductibles going up?

Maybe it’s because drug companies create drug prices that are works of fiction and nobody ever does anything about it.

It’s getting out of hand.

Why is the ratcheting up of drug prices boundless and ever-expanding like some dark, evil universe?

Why are we so willing to sit here and take it?

I’d love to be able to shut up and be all doe-eyed and agreeable, maybe pick up a pyramid scheme and make adorable cupcakes and pretend I’m all joyous and shit, like a regular “mom blogger.”

But I can’t. Just can’t.

My son’s body is already under attack by his disease, cystic fibrosis. But that’s not the only predator closing in on him. There is something else eyeing him from the shadows. A tiger is stalking him. That tiger is greed, and if we don’t do something now, it’s going to eat my son alive.

Thank you for your support. My petition has almost 9,000 signatures, and I’m blown away.

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Problems, problems, how you gonna solve ’em?

Sometimes you just gotta write through the fog of despair to find clarity.

That’s what I did Saturday, starting at 5:30 a.m., before my kids were up, so I could let go of a crummy week and have a fun Halloween with the family.

I discovered that when you put it out there, solutions float your way. Some come in the form of an epiphany. Some come from the wisdom of pals who know what’s what.

Problem 1: My son decided he doesn’t want to do any physio for cystic fibrosis, and instead prefers flipping chairs, thrashin’ sis and popping mom in the nose in protest

Solution: Epiphany= visit Amazon.com and order youth punching bag w/ 2-day shipping (we can’t take it any more)

This punching bag as as substitute for the rest of us.
This punching bag as as substitute for the rest of us.

Problem 2: Getting Eli’s treatments in before and after work and an extra session for crud cough battle

Solution 2: Friend idea=Let someone else do it!

After I lamented all my woeful woes, a CF mom (Hi, Becky!) texted me. Our kids go to the same day care, which caters to children with special needs. Crazy thing about CF – our children can’t get within six feet of each other due to infection concerns. They aren’t in the same class and don’t threaten to infect others – but CFers lungs like certain types of bacteria and can spread that bacteria to each other. This day care is so on it they basically follow our children around with Lysol any time the other is in a common space. Anyhow, other CF mom e-mailed me to remind me that our day care handles this type of special need – like vest sessions and breathing treatments.

This solution was so right there and so right on and we’d tried it once before, then gave up. Why? Mark brought Eli’s vest to school once and Eli stared at it in silence as tears streamed down his face. Pops never had the heart to haul the equipment to school after that. I guess we were both resigned to being the party responsible for pissing off our toddler with his treatments.

Becky reminded me that the school is there to help, as a partner for parents who need partners in care. YES.

Eli needs three sessions on a shaking vest a day to shake up his lungs so he can circulate and/ or cough out the thick sticky mucus his body makes. He needs good sleep because he’s a growing boy whose body is always fighting invisible battles. And we need to get out the door on time and sans exploding heads.

So off to daycare pops and the vest go again! It packs up in a bag the size of an XL carry-on, but it has rollers.

This was all a good reminder: We can’t get through this crazy game called life alone.

We need punching bags, friends and a helping hand!

xo

Bruiser and me

daily-life

Thirty pounds of rage can flip chairs, shatter sound sound barriers and thrash at your heart, one so full of love for this little bruiser.

Seems at nearly 3 Eli has decided he has a lot to say about the hours of treatments and physical therapy we put him through each week to keep him healthy.

He can say quite a few words but prefers a gutteral, blood-curdling battle cry when he wants to get his point across. He curls his fists, plants his feet in place and opens his mouth. Piercing anger flashes behind those pale blue eyes.

His preferred punctuation marks for these expressions entailed a wild swinging fist that landed on my nose, a wooden puzzle flung at my ankle,  two upturned chairs, extra bonus screams for dad and a thrashing attack on sis.

Thirty pounds of anger is strong and loud and completely unnerving.

Because this is a little person who is docile and cuddly morning and night and whose face radiates not with anger but with joy and innocent mischief and curiousity in the time in between these outbursts.

Eli has CF and for the last month and a half his lungs have taken a good crack at him. It started out of nowhere one night, when my healthy buddy’s body turned on him. Cough-free one day, by the next, his eyes were full of goo and his lungs full of crud and he screamed himself awake tugging at an ear. We put him on amoxicillan the next morning instead of waiting the usual six to 10 days to see if the sickness looked to have stuck. The antibiotic halted the ear tugging and cleared gunky eyes but didn’t touch the cough. We’ve moved to Bactrim, a stronger antibiotic. He’s still coughing and we’re about to start a second 21-day round of it.

The shaking vest he wears for at least an hour a day has become enemy No. 1. I bring it out and he hides, laughing, under the kitchen table, a desk or bench. Then as I retrieve him he squirms and starts to scream and tells me “No, mommy. No!” Thus far in his short life, cuddles, cartoons, gummies, juice, a puzzle together – stuff like this – has been enough to make the physical vest therapy tolerable. His breathing treatments take an additional half hour, and he won’t do them at the same time as his vest.

With extra vest sessions for his cough he spends 14 hours a week strapped to equipment.

Not only that, we had the audacity to put him back in day care after a fun vacation He clings to us and cries each day we drop him off. Might I add he is at a wonderful place that cares for children with special needs. I love the teachers and staff and have total confidence he is engaged and happy when out of sight of his parents. The day care send me updates all day through an app, including pictures of him happily playing with other kids.

But any way, back to day care means waking up early-around 6 a.m.-to do his treatments in the morning.

Wednesday after finishing everything up, buddy mounted an assault on his parents and sister.

It culminated as he hit me in the nose, thrashed sister during bath time, screamed at pops, threw books, papers and toys from a bench and flipped a chair — twice.

What could I do but let his tantrum burn out enough to give him what he claimed he wanted in between blood curdling banchee screams — a bath.

I put him in the bath.

We had a conference.

I explained to my 2 year old that we have to do these things to stay healthy. His body has a disease, cystic fibrosis, so we have to try extra hard and be extra big, and we can’t scream and destroy since it hurts us and it hurts feelings.

“Do you understand, baby?”

“Yeah,” he said sweetly, looking down at the water.

Eli said sorry to me, pops and Laila. We picked up everything he’d attempted to destroy on his rampage.

I told him the story of “Eli fire engine,” which usually entails a family of fire engines rescuing a cat before putting out fires at the playground set by a neighborhood dragon.

Then he went to sleep and I collapsed and cried myself to sleep.

But looking back on a tough weeks there were also good times.

Laila got her first loose tooth. We made cut-out bats for a Halloween party. I sent (super late) birthday gifts to my newest nephew, but picking them out was a delight.

We thought through our routine and made changes to make it better and make Eli’s health better.

For one, I’ve asked for and received an order for a new breathing treatment. Hypertonic saline starts next week. It’s another two treatments a day, and yes, that’s a pain, but the point is getting  him to breath vaporized salt water so he coughs up this crap that ails him and beats this stupid cough.

Before I put him through that I’m getting him a faster nebulizer. A nebulizer is an air compressor that pushes air through a tube and into a contraption that vaporizes his medicine. We need a Cadillac. We have what feels like a 1999 Ford Focus and it’s pissing buddy off.

We are going to try to strap him to his vest while he’s asleep. I get up at 4:45 a.m. any way. Wish me luck.

Dunno, this kind of stuff also gets me thinking about our lives.

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I wonder why my son has to suffer, and if somehow there is a deeper meaning.

I’m not religious. I’m not the type who can quote scripture and feel better, or feel anything at all. . I’m not an atheist either. I pray. I send thoughts up to my mom, who died five years ago. I’m somewhere in the middle and I don’t really give it a label.

If nothing else, though, our horrible CF care week served to remind me about the importance of being kind and appreciating anything good, even something that is tiny and good.

I re-sest kind my default across the board. I focused hard on every happy moment that came our way.

Being a caregiver is hard, but I’m not the only type of caregiver. People are dealing with all manner of problems – addicted relatives, aging parents, sick children, deep disappointments they keep to themselves, all types of stuff.

After I dropped my daughter off one really hard morning, this is the stuff that was going through my head. You don’t know what someone has just come out of, so be nice. Let’s give each other a break.

Eli’s care brought other challenges — like, Mark and I, we need to be kind to each other. And in the mornings, we just weren’t, like, four  out of the last five days. The stress of getting a wailing, angry toddler through physical therapy before breakfast and again before bed nearly did us in. Both of us need to work on the following pattern:  Ignore bad behavior. Forgive bad behavior. Apologize for own bad behavior. Repeat. This person I married and love can send me from 0 to head explosion with a look. This person I married and love is the only person who sees me at my most vulnerable, there to hug me while I cry because our son is sick, because the care we give him to keep him well is akin to torture in his toddler world, and he understands why I’m crying like no one else on this planet can. In the madness of this week we somehow managed an escape. We hired a sitter and got out for a night of beatnik-style speakers and drinks and mingling, like wow, man. Snap snap. This is the kind of stuff we did together in Chicago, before we had kids, before life took us through fast moves across multiple states and financial hell and the loss of my mother and the birth of my daughter and then my son, who has this illness that needs to be cured, all within five years of saying “I do.” And here we are, still together and still able to have a laugh and a drink.

The other part of being kind is being kind to yourself. We both chose rest over domestic duty. Our days are exhausting and we have no family here to help. As a result we’ll be digging out from under the laundry all weekend. And that’s OK.

We’re all gonna be OK.

Buddy shows his scar and fist pump.
Buddy shows his scar and fist pump.

Smoothie every day: Melon-o-maniac

Melon-o-maniac, the smoothie obsessed with its own power.
Continue reading Smoothie every day: Melon-o-maniac

Cystic fibrosis claims life of Chilean girl who begged to die

I’m saddened to learn that cystic fibrosis took the life of Valentina Mauriera, the 14-year-old Chilean girl who begged to die after spending her life fighting the same terminal genetic disease that killed her 6-year-old brother. After posting her plight on YouTube,  the world responded with love and she changed her mind. Only weeks later, she lost her battle with CF.

I struck up a correspondence with Valentina’s dad after hearing about her. We were trying to arrange a phone call,an interview for a freelance piece about her family. It would take some coordination of schedules, time zones and the help of a translator, but I made progress. When her father stopped writing back after initially being quick-to-respond, I thought the family members had either changed minds about our talk or that Valentina had gotten sicker.

I’m well aware the illness she shares with my son is lethal, but I didn’t know she was this close to death. 

I will still write my essay. I only wish I could have met Valentina.

El Espectador reports; here is an English translation:

Valentina Maureira, the 14 year old who suffered from cystic fibrosis and a video called the president of Chile, Michelle Bachelet, permission to die and end their suffering through euthanasia.

The death of the young was confirmed by his father, Fredy Maureira “. At 13:25 pm my daughter left did many things for other children, children who are dying and let me flag high,” his father said , Radio Cooperativa.

The case of the girl, who stood at the Clinical Hospital of the Catholic University of Santiago, Chile reopened the debate on euthanasia, after disclose a video in which he asked to be subjected to this procedure.

“I request urgent talk with the president, because I’m tired of living with this disease,” held in the video, shared thousands of times on social networks. “She can authorize me an injection to fall asleep forever,” he added.

In the request, the Chilean government was willing to support the girl and her family, telling them it could not authorize the medical euthanasia because there exists in the current legislation.

Indeed, Bachelet responded to the request made a private visit to the girl at the end of February at the hospital.

Valentina message caused a great impact in the country, which does not have a regulation on medical euthanasia, and reopened the debate on the possibility that the terminally ill can decide about their situation.

The death occurred the same week that the Senate Health Commission sent to report to the Chamber rejected the bill that seeks to grant the request for assisted death for the terminally ill.

Hereditary nature of the disease had already killed one of his brothers at six .

  

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Said no one ever: I love physically restraining my screaming toddler so he takes his medicine.

I love restraining my screaming toddler so he takes his medicine.

I love the way he moves his feet because my thigh has his legs pinned down, and it’s all he can do to protest.

I love the way he screams and shakes his head “no” again and again and again.

I love the way he says “all done! all done! ALL DONE! when he manages to wiggle out of my arms, which have pinned his body to my chest.

I love putting the mask back on despite his insistence that he is “All done!” and then holding his head in place tight against my chest so he can’t move it.

I love the sadness in his watery eyes and anger in his little furrowed brow.

SAID NO ONE EVER.

Eli is coughing again after a few weeks off.

We have hit a new phase called: Terrible 2s, treatment resistance!

What I’m trying to say is: “Rough session with the meds this a.m.”

(understatement of year)

Then Eli threw a Lego truck at my head

The end.

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

Feeling better

Quick note: Eli’s 0-to-crud-in-60-second cough has improved a lot.

Daily, he is on 1.5 hours of vest, an antibiotic and breathing treatments of Albuterol plus our new treatment, Pulmozyme for a cruddy cough that appeared out of nowhere. He doesn’t have a consistent cough any more, but he coughs during his treatments. That’s good because it means his lung juices are flowing, expelling troublesome gunk.

Little man turns off his compressor and says “All done!” before he’s done. He’s just about had it with all this stuff.

When we turn it back on, he says, “Don’t do that!”

It breaks mommy’s heart a little.

It makes me smile, too, though, my little buddy using words to exert a little control over his tot life.

“Don’t do that!”

He says it with such determination and confidence. Nice work, buddy!
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0 to crud in 60 seconds

I put a note on my Facebook page for Eli that buddy improved and was no longer coughing.

Shouldn’t have done that.

Continue reading 0 to crud in 60 seconds

Disney’s on a stick, soup’s in the oven

Saving to pay off debt is incredibly fun, said no one ever.

I need a carrot, and that carrot is the Magic Kingdom.

Continue reading Disney’s on a stick, soup’s in the oven