A grand adventure is never complete without a financial analysis, and it has been awhile since we've had one of those. I always hesitate because I don't want to sound needy. We aren't needy. We are quite resourceful, actually, and doing okay, thanks to certain programs we've been able to take advantage of. I also don't want to sound like we are doing too well, because, well, accurate representation. So here is a bit of where we are at, no extra polishing, no making it worse than it is, just an honest account of our experience in Crazy Cancer Land.
Our biggest issue right now is finding insurance once we inevitably exceed the cutoff for the Medicaid coverage that has kept us solvent since June.
So let's break this down. Realistically, shopping for insurance on the open market, the cheapest plan we can find will cost us $29,500/year. This is taking into account premiums, deductibles, copays, etc., because when you are saddled with a cancer diagnosis (or anything else chronic or life threatening) you WILL squeeze every penny from your insurance. Yes. We're what's wrong with healthcare. We get it.
So. Stay with me here as I wax hypothetical... In order to afford almost $30,000 a year in medical expenses in a family of four with two young kids, instead of staying home with them, mom (or the non-primary breadwinner, who in our case is mom) has to get a job. Guess what? Now you have to add daycare to that. Let's say $20,000/year to leave the kids with someone else five days a week. I don't know if that's realistic, but that's about what I found two years ago looking at commercial licensed daycare. While they raise your kids, you now have to make $50,000. This, of course, doubles or even triples your income. Now you are in a higher tax bracket, so let's add around $10,000 for that. (I don't actually know, just stabbing in the dark on that one, but in our non-hypothetical case, we're self employed so our tax bracket is pretty high.) So now mom has to make $60,000/year. And for that $60,000, she sees zero net rise in her family's well being. In fact, not a penny of that is available to be saved or spent.
Let's be honest. What possible motivation would a family living just under the qualifying cutoff for Medicaid ($32,000/year) have to go over that cutoff? The primary breadwinner could much more easily cut back on his or her hours to fall below the cutoff, have time to spend with their family, mom (or non primary breadwinner) can stay with the kids and raise them at home, and their quality of life is higher than if they worked hard and made an extra $60,000 (still with me? That's $92,000 for the family- the original $32,000 cutoff that, when they exceeded, bounced them off Medicaid, plus the $60,000 needed as a consequence.)
So now let's say, in 2020, there is a freeze on new Medicaid enrollees. This means that even if a family decided to do the "right" thing and make a stab at working hard enough to make that extra $60,000, they pay for their own health insurance... But in a few years, they realize they can't swing it. Maybe they have another kid, or a health crisis, or a vehicle breaks down, or literally any unforeseen expense. Now they don't have the option to go back to one income and Medicaid. Guess what this means? Thousands if not millions of people right now are doing the math. "If we try to be self-sufficient and we can't, in four years we will lose our safety net. Well, it was a nice thought, but we can't risk it. Guess we'd better move the recliner to the front porch because we're gonna be spending a lot of time there, now that we've decided to make even less money for the foreseeable future".
Of course, the American Dream being what it is, a more likely scenario is that they will still work hard, just not hard enough to make up the difference, exceed the cutoff, shop for insurance, realize they cannot afford it, and become uninsured.
So about that: 1 in every 285 kids will be diagnosed with cancer in the next year.
In our experience, an overnight stay at a U.S. children's hospital costs about $7,000/night.
Certain chemotherapies (used to replace more common ones if the patient has an allergic reaction as happened with us) cost over $200,000/infusion.
At home oral prescriptions can cost from $300-$700/month (or more, that was just our experience before we had prescription insurance.)
We and our insurance have paid over $1.5 million to keep our child alive. We never thought it would happen to us. There's a 1 in 285 chance it will be you next, and that's only childhood cancer, it doesn't even account for adult cancers or other health issues. I don't say this to freak you out about cancer. I say it because I want everyone out there to understand how imperative it is that Americans have access to healthcare, and how hard it actually is to chase the American Dream, that belief that you only have to work hard to achieve your financial goals.
We're happy. Like most Americans who have never had to choose between food and heat, we naively assume it'll all work out for us. We live well, if minimalistic, which is exactly how we like it. But if anyone wonders why they shouldn't judge someone as a "welfare queen" because they intentionally make less money than they could, well... it's complicated.
What isn't complicated is living where I can walk outside my back door, climb from my driveway, up three feet onto the snow, and find myself in a silent, white world, just me and a happy dog and the mountains sliding under my skis. It's free. It makes happiness. We don't need a lot here. Our big expense is a ski pass, which means we can go on vacation three miles from our house whenever we can get away. Our house is small, which I love aside from storage issues, which wouldn't be an issue if we weren't running a home repair business out of it. Two alive kids are, when you think of it, especially through a lens of how it could be, the most amazing thing we could ask for. The future might get harder for us, looking forward in light of certain proposed healthcare changes, but the only bridges we can cross are the ones we are standing in front of. 
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