Hello! It's been quite a week, huh? I thought I was going to polish off some comfort food and wine election night, but instead I spent it in the emergency room, watching Alex struggling to breathe through a croup episode and trying to keep him calm in spite of getting less air than he needed. Then I brought him home in the wee hours, temporarily fixed up with steroids and racemic epinephrine, to sit and process what had happened with the election. Not just the results, because no matter which way it could have gone, only time will tell if we will be better off, but the way human decency left the building this year.
I am choosing to live and love and try to learn in spite of not understanding what happened this year to the whole process, from messed up primaries giving us two completely polarizing and unelectable candidates, to trying to understand how personal integrity and family values, such a popular subject other elections, became somewhat irrelevant this year, and moving on... to how it affects us, as in yet more healthcare reform.
The president-elect promises to repeal the ACA, which definitely had its issues to iron out, but was the only way we could be sure our little cancer fighter with a now pre-existing condition would be insured and not have a yearly or lifetime limit on healthcare expenditures. I'm not saying we and other families of tiny heroes are screwed, but I'm not saying we're not, either...that is impossible to know right now and only time will tell. But. If this turns out badly for those with pre-existing conditions and those who, like us, have a three year old who has already had $1.5 million worth of treatment and a 90% chance of some sort of future, chronic health issue, from nerve damage to learning disability to relapse or secondary cancer, we foresee only two options: keep our income low enough to qualify for Medicaid (there go all those grandiose promises of prosperity), or, in the worst case scenario, ask our friends who voted for the candidate who promised to repeal it to help us pay for Daniel's treatment out of pocket. (You all won't mind, right?)
For some of his supporters, it might have been as simple as plugging their nose to swallow his distasteful words and actions, and voting for the candidate who promised lower insurance premiums on a plan they don't use because they and theirs are healthy. For Daniel, that might mean having to compromise his ideals to remain eligible for government assistance, fight with insurance companies and play the system his entire life, and have every decision he makes be influenced by whether or not he can remain insured. I don't know. It all depends on what replaces it. We were hitting boiling point with the ACA, as well, needing to save the parts that worked and rework the parts that didn't. But, regardless of party affiliation, it was a good window of time in our healthcare history to be diagnosed with cancer- we didn't have to worry about that diagnosis limiting his healthcare options.
Here is a brief picture of what we have done so far: Daniel was diagnosed in Colorado on an 18 month extension of Kansas Blue Cross Blue Shield. That covered $1.2 million of his most expensive chemotherapies to date. It did not cover prescriptions and out of network ambulance rides, so we paid, in addition to $600/month premiums (on an outdated plan grandfathered in, hence the lack of prescriptions as recently as last year), $16,000 out of pocket. It covered all facility-administered meds, but around the time Daniel needed to start taking expensive, out-of-pocket oral chemo, we realized how fortunate we were to have moved to Colorado during a tech, tourism, cannabis and oil boom, with a healthy state budget and an expanded Medicaid program, and finally got him on secondary state insurance based on need rather than income- the Home and Community Based Services Waiver, which covered whatever Blue Cross didn't. Then the oilfield left town, and with it Bobby's job, at the same time our Blue Cross extension ran out. Which left us with no income, living entirely on savings and qualifying the whole family for Medicaid, no other options for subsidies, or, if we didn't want Medicaid, paying for an unsubsidized plan, which would cost us $1,200/month. Obviously, we chose Medicaid. Now, do you know what you can't do with Medicaid and a medically fragile, severely immune compromised kid who has to go to the ER for every fever or nosebleed? Leave the state. You won't be covered. At all. We cancelled all our family reunions except the ones close enough to the state line we could run him to the closest Colorado emergency room if needed. The only place outside of Colorado we have been while on Medicaid is a half-hour into Kansas.
Now, just as our income is creeping back up enough to kick us off Medicaid, we see the election of a candidate who has promised to repeal subsidized insurance that guarantees coverage to cancer survivors and does not allow limits on how much one patient can use it. Even with the ACA, doing the math, we needed to make $20,000/year more to pay premiums and deductibles to maintain the same income we have with Medicaid, once we get kicked off. Now, there is no way to know what our future holds. While trying to research what might happen, I have heard from people on online cancer boards who, before the ACA, had to get divorced or adopt their sick kids to elderly relatives in order for them to qualify for government healthcare that would cover pre-existing conditions. I've judged people who admit to playing the system and keeping their income low enough to qualify for government assistance, but we find ourselves in the same dilemma- stay within 135% of poverty level, or find a way to make an extra $20,000 /year just to break even. And it might not even be about the money- even if we made an extra $50,000, that does not guarantee, without the ACA, that a plan with no spending limits and no pre-existing conditions clause will be available to us, aside from income-based government healthcare.
So, can we all, no matter who we voted for, hope and campaign really hard that families dealing with diseases like cancer, Spinal Muscular Atrophy, Muscular Dystrophy, HIV/AIDS, Multiple Sclerosis, all autoimmune disorders, and rare diseases can not become as marginalized as the people groups already made to feel "less than" this election? Yes, insuring very sick people makes everyone's costs go up, but to their families, these precious fighters are the whole world. I wasn't always a cancer parent either. Tomorrow, you may wake up as we did on April 22 of last year, notice your own child looks a little pale, and become one of us.
I love you. You have been absolutely wonderful, and you know that $16,000 we paid? Almost two thirds of that came from you. It arrived in envelopes, sometimes without return addresses, it showed up on our gofundme, sometimes anonymously. It nearly rips my heart from my chest to think of how much love we have been the recipients of. I am confused about how someone who used hate speech in his campaign even got through the primaries, let alone elected, but the fact remains that some of the same people who campaigned for him sent us their own money when we needed it the most, so I know love for fellow man is in your hearts, and I return that love.
The world keeps turning and we keep on hoping for healing on a national and world level, for our hearts as well as our bodies. If everyone who voted donated one dollar to childhood cancer research, we could double the research budget for a year. That's a campaign I can get behind.
Alex is still having a hard time breathing, but between keeping the house humid and taking him outside in the wee hours to breathe cold night air, and holding him to keep him calm, we have avoided another ER trip. It's been scary a few times hearing him gasp and honk when breathing, but the worst episodes have been short ones. I don't know if this is the difference between Loveland and Summit County or the difference between Blue Cross and Medicaid, but the the same low oxygen saturation and biphasic stridor that didn't completely resolve in the ER that got him admitted last winter got him discharged from the ER in record time the other night.
Daniel had a chemo break for low counts at the beginning of the month, so we have been on house arrest a lot lately. So far, he hadn't gotten whatever Alex has, so our fingers are crossed. Daniel has, however, been extremely oppositional, confrontational, and mournful lately. Which usually means either he doesn't feel great or he is three years old. He's also in detox week, very rashy at the moment. We go in for chemo (IV only, no spinal) in seven days. 
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