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This is my daughter Rebecca in 2013.  She was 5¼ years old when I took this picture.  Less than three days later, she almost died on an ER bed.

She’d been completely fine when we set out for vacation that year, and just seemed to come down with a virus or something just after we arrived.  She got checked out at an urgent care center, where they diagnosed strep throat.  But antibiotics didn’t help.  She slowly got more and more sick.  We finally took her to be checked out at a nearby hospital, who were just as stumped as we were.  They were looking for a room to put her in when she seized and flatlined.

Just like that.  She’d been ill, but not severely so.  All of sudden, she was on the edge of death.  The ER staff barely stabilized her, by intubating her and administering drugs to induce a coma.

There was a large tumor in the center of her brain.  Our five-year-old girl, who so far as we knew was completely fine just days before, had aggressive brain cancer.

After a midnight life flight nobody was sure she would survive, she arrived in Philadelphia and had several cranial surgeries, spent more than a week in the pediatric intensive care unit, and then was transferred down a few levels to spend another two weeks on the recovery floor, slowly rebuilding the muscle strength she’d lost from more than a week of immobility.

Later, there were weeks on weeks of radiation and chemotherapy in Philadelphia.  After the initial treatment was done, we came home to Cleveland for more chemotherapy.

This is her, hauling her baby brother Joshua up the slide in our backyard, and hauling her mom through the crowd at the local garlic festival.  At a CureSearch walk with her siblings and dozens of friends and family.  Just barely tolerating my terrible dad jokes, doing her utmost not to encourage me by laughing.

We did everything we could, sometimes through tears and sickening horror, but the treatments didn’t work.  Rebecca died at home, surrounded by friends and family one final time, less than ten months after her cancer was discovered, in the early evening hours of June 7th, 2014, her sixth birthday.

In those ten months, the total retail cost of her procedures and treatments was $1,691,627.45.  Nearly one point seven million US dollars.

We had health insurance—really good insurance, thanks to COSE’s group plans and my wife’s and my combined incomes.  The insurance company’s negotiated rates meant they paid $991,537.29, or about 58% of the retail price.

We paid very little, comparatively speaking, until you counted the monthly premiums.  All of it together, co-pays and premiums, was still in the low five figures.  Which we were, fortunately, able to pay.

Without insurance, even if we’d been able to get the insurer’s rate, we’d have gone bankrupt.  All our investments, our house, everything gone.  If pre-existing conditions had prevented us from being covered, or if we’d been less fortunate and unable to afford premiums—bankrupted.

In which case, Rebecca’s brother and sister would have suffered her death, and the loss of their home and what precious little remained normal in their lives.

How many families live through that double hell?  How many go completely broke trying to save their child?  How many could have saved their children, with coverage that paid for life-saving treatments?  How many never had any chance of saving their child, but ran out of money before treatment was complete and now believe their lack of insurance and money was what killed their child?

How many more will have to live with those unthinkable situations, if the House and Senate bills go forward?

The point, the essential point, is this: every family should have the chance to fight as hard as possible for their loved one’s life without going bankrupt in the process.  And for those who cannot be saved, no family should be denied the knowledge that they didn’t have a chance.  Because knowing that does provide some (small) measure of comfort.

The Affordable Care Act wasn’t perfect, and it was severely and willfully undercut after it launched, but it was a huge step in the right direction.  The bill currently before Congress would be an enormous step back.  I doubt that I’ll benefit from the tax cuts that are part of the bill, but if I do, I’ll commit every cent I get from them and more to unseat anyone who votes yes on this bill.  I have let my senators know this.

I would spare every family the pain we endured, if I could, but nobody has that power.  We do, together, have the power to help every family that must endure that pain, to give them access to the simple safety net they need, to concentrate everything they can on the struggle to heal.

I miss her every day, but I know that we did everything that could be done, including being able to afford the hospice care that kept her as comfortable as possible in her final hours, preventing the seizures and pain and fear that would have made her last moments a hell beyond endurance.  Allowing her a peaceful end.  Every family should have access to that.

Please think about what it means to take that ability away.  Please think about what it means to take away the ability to avoid having to make those choices.

Please.

11 Responses»

    • #1
    • Comment
    • Mon 26 Jun 2017
    • 2359
    Carrie wrote in to say...

    Thank you so much for sharing Rebecca’s story.

    • #2
    • Comment
    • Tue 27 Jun 2017
    • 0958
    Chris wrote in to say...

    Eric – Your stories have touched me from the very first time web development became part of my life. Thank you for your knowledge and for teaching us the right way to make the web.

    But more – thank you for sharing your experiences with Rebecca’s life so openly and honestly.

    I am grateful for living in the UK – where our health service has paid for my late, first wife’s ovarian cancer treatment, and for my second wife’s sucessful treatment of breast cancer.

    My thoughts are with everyone in the US facing the consequences of this huge mistake on funding health care.

    • #3
    • Comment
    • Tue 27 Jun 2017
    • 1037
    Kenn wrote in to say...

    Her smile is beautiful. Thank you so much for sharing.

    Coincidentally, today is two days after my wife’s birthday, who died from an ovarian cancer two years ago.

    She received a surgery, and stayed for three weeks at the hospital just to control the pain while waiting for a path result, not receiving chemo yet, but the nominal price of the treatment added up to $170,000. Like you, our insurance saved us from going bankrupt and just paid low five figures.

    Then we decided to take her to our home country, Japan, where she spent her time left in a hospital, surrounded by friends and family.

    She had been hospitalized for five months (she never had a chance to go back home again, and I lived in the hospital with a sleeping bag the entire time), and the cost was like $10,000.

    In Japan, no one has to worry about going bankrupt to receive an evidence-backed medical services – in fact, the prices are determined by the government and prices are the same anywhere in the country.

    Now I can’t imagine how much I’d been stressed if we continued to stay in the US. Even with an insurance, they try to undercut the coverage in any way possible, which is incredible. It just scares me that there are families living through that double hell without an insurance, as we speak.

    • #4
    • Comment
    • Tue 27 Jun 2017
    • 1651
    Harald wrote in to say...

    Eric, very touching – and from your experience a very serious warning for those who have to vote on this bill.
    To make “America great again” you need people who can be sure not to go bankrupt while trying to save the life of a beloved or to just give them hospice care or anything else they need to face their fate.
    I am a German who is much worried for his American friends (which is all of you). I don’t thing it to be right that any human be denied the possibilities we have in Germany or you and Kenn had for your beloved and passed away ones.

    • #5
    • Comment
    • Thu 29 Jun 2017
    • 0015
    Miguel Useche wrote in to say...

    Hello!

    I was doing some CSS work and somehow rebeccapurple came to my mind, I visited this website to see what was about your life (I follow you on twitter for your work) and I see this.

    Hope you are ok as spiritual and economically. I’m amazed how much many you have to spend on care, hope someday US will fix that.

    Keep strong! I don’t have kids yet, but I can’t image what you have passed. Wishing you the best and my prayers for rebecca.

    • #6
    • Comment
    • Thu 29 Jun 2017
    • 1904
    John Veld wrote in to say...

    Not preaching. Whilst discussing pragmatic things, Buddha saw food, shelter, medicine and clothing as essential for life. I believe these to be the minimum mandate for any democratically elected government. The last image beautifully captures a whole person.

    • #7
    • Comment
    • Sun 2 Jul 2017
    • 0657
    Jonathan Mayer wrote in to say...

    Eric, this is a deeply touching and horrible story, but out of yhat there is a lesson that needs to be put out there. My wife is a web developer (KoolKat) in Seattle and follows your blog. As a Professor of Internal Medicine and Epidemiology, I can tell you that this could have a big influence. I think that you ought to try to publish this in the New England Journal of Med, or JAMA, or as an op ed in a newspaper with very broad circulation. I would be very glad to help you. I showed this to a driend and colleague who is a palliative care/hospice physician and colleague. He agrees. Do contact me if you are at all interested. I am in France right now but check email regularly.

    Thank you for writing this. Out of tragedy, some good. L’chaim.

    • #8
    • Comment
    • Thu 27 Jul 2017
    • 1202
    Ron Flack wrote in to say...

    Eric, I was asking a colleague if he knew your story. We confessed that we both have been deeply moved at your transparency regarding Rebecca. I searched out rebeccapurple this morning and found this post regarding the access-ability of insurance for others that walk the path that you know so well.

    Thank you for sharing Eric. Though its hard to quantify, I believe your transparency has affected many and can in the future as well.

    Hoping for the best,
    rf

    • #9
    • Comment
    • Sat 19 Aug 2017
    • 1532
    Eric Meyer wrote in to say...

    Hello Eric,

    I haven’t been a regular reader of your blog. I came back today because I noticed your books on my book shelve and remembered I much I learned from you.

    I was shocked and touched by Rebecca’s story. I am a father of an 11 year old girl. I am very very sorry for your lost.

    Pierre

    • #10
    • Comment
    • Fri 8 Sep 2017
    • 1843
    Pedro vargas wrote in to say...

    WOW your country is pretty evil when it comes to health, the hospital assumes all americans are rich or what?

    In mexico the total would never go close to $10k (here you cant get jail for not paying debt to a person or private company)

    • #11
    • Comment
    • Wed 8 Nov 2017
    • 0350
    alhrmd wrote in to say...

    Her smile is beautiful. Thank you so much for sharing.

    Coincidentally, today is two days after my wife’s birthday, who died from an ovarian cancer two years ago.

    She received a surgery, and stayed for three weeks at the hospital just to control the pain while waiting for a path result, not receiving chemo yet, but the nominal price of the treatment added up to $170,000. Like you, our insurance saved us from going bankrupt and just paid low five figures.

    Then we decided to take her to our home country, Japan, where she spent her time left in a hospital, surrounded by friends and family.

    She had been hospitalized for five months (she never had a chance to go back home again, and I lived in the hospital with a sleeping bag the entire time), and the cost was like $10,000.

    In Japan, no one has to worry about going bankrupt to receive an evidence-backed medical services – in fact, the prices are determined by the government and prices are the same anywhere in the country.

    Now I can’t imagine how much I’d been stressed if we continued to stay in the US. Even with an insurance, they try to undercut the coverage in any way possible, which is incredible. It just scares me that there are families living through that double hell without an insurance, as we speak.

    http://eredappa.com/

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