CN: Child illness, cancer, late-stage capitalism

84 days ago, we learned about my daughter’s brain tumor- a craniophryngioma- a very rare diagnosis.

As of today, this diagnosis has cost $167,000+ dollars. At one hospital. Since diagnosis, we’ve been to four.

She’s had four MRIs, two CAT scans, multiple endocrinology visits (with their attendant blood draws), a brain surgery, follow ups for brain surgery, additional pediatrician visits, and ear/nose/throat follow ups. Today will be radiation session #12 out of 30.

Would our family gladly pay anything to have her healthy and headed toward a long life expectancy? Absolutely.

Am I aware of how fortunate she’s been to have had a life free of medical complications and costs until she was 8? Yes.

Do I know that lots of children with the same diagnosis need even more interventions and treatments? I do.

All of that knowledge, however, does not negate the fact that the United States has an absolutely stupid system for paying for healthcare.

My daughter’s craniophryngioma was diagnosed in an unusual way. Its first effect was to her eyesight, which was caught in her 8-year-old well child checkup. She was at her well child check because 1) we have insurance which covers these visits and 2) she has parent(s) with flexible schedules who can take her to an appointment like this during business hours.

She couldn’t pass the eye test part of the well child check, but everything else was fine. We don’t have vision insurance, but we do have enough spare cash to pay for an eye doctor (at Costco). So again, having the money and the time meant we could follow up on this strange part of the test. If we had been low on either resource, it would have been easy to put off follow up since she had no pain and the vision issue did not seem to be affecting her life at home or school.

That’s a thing to keep in mind- we pursued eye tests and then were sent for an MRI, ultimately resulting in a medivac to Denver for a child who was laughing, eating applesauce, and quoting Star Wars right into the ambulance.

If funds had been tight or non-existent or if we didn’t have insurance, it is likely that we wouldn’t have known about the craniophryngioma until it was truly affecting her life via blindness, stunted growth, or other unexpected conditions.

In all of this, we’ve been able to say yes to any treatment because we have insurance. Currently, it is through my husband’s work history (he’s retired now), but we could easily be insured through my work. In the United States, the most reliable insurance (theoretically) is linked to certain types of work. Having decent insurance coverage is often tied to work that expects certain levels of education, availability, and willingness to buy into the bulls*t of late-stage capitalism by finding one’s worth in one’s productivity for pay. Not ironically, the ability to have that kind of job is often tied to being healthy, which may depend on whether one has… insurance.

When I sit in waiting rooms, trying to pretend I’m not anxious, my eyes roam the other people in there. We all want the best for the ones receiving treatment. Yet, in any given waiting room, there are probably at least 4-5 families who have Go Fund Me accounts set up for medical costs. Some who have mortgaged houses or other properties. Some who are prepared to die with debt for the cause. Even my own insured family has relied heavily on the generosity of others to cover our deductible, co-pays, and travel costs.

This is more than the need for universal healthcare coverage- which is long overdue in the United States. This is about actually treating people with kindness, compassion, and mercy. It is about believing in human worth apart from productivity or potential output.

No one should have to wonder if their 8-year-old will ever be able to have her own health insurance because the now she has a “pre-existing condition”- the U.S. healthcare term for what the rest of the world calls “medical history”.

I realize that some people will say I should just be grateful that we have insurance and community support and that she’s getting great treatment.

To quote the singer Meat Loaf, “I’d do anything for love, but I won’t do that.”


The Reverend Julia Seymour serves Big Timber Lutheran Church (ELCA)  in Big Timber, MT. She blogs at lutheranjulia.blogspot.com and readsallthethings.com. She contributed to There’s A Woman in the Pulpit and is President of the board of RevGalBlogPals, Inc.


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5 thoughts on “The Pastoral is Political: The Time Has Been Come

  1. Tone-policing our own suffering (or the suffering of our children) in the hopes that we will find benevolence is standard operating procedure in so many contexts. If we can just be “good” sufferers and never challenge systemic injustice that harms at our base level of values and faith, someone with more money, access, authority, etc. might help us.

    Liked by 1 person

  2. Amen to this! Too many other countries manage to make it work for us to claim it’s not possible. Collectively, we just don’t care enough about those who are vulnerable. Prayers for healing for your daughter and for God’s love & peace for all of you.

    Liked by 1 person

  3. Because some friends of mine have a child with an “orphan disease” (less than 10 children have this disease), I have thought about what I would say where I ask to give the message at the funeral. It would be entitled “I Should Not Be Giving This Message” and I would say that we are a nation who profess to follow Christ; we are created in the image of God, so we have the ability and the intellect to be creative. And yet, we spend our money on destruction; our society is out of alignment with the goals of God’s Kingdom.

    I probably will never give this message and probably shouldn’t because it will be an angry message when the message should be one of comfort. But the thoughts are there that a child died because we, as a self-professing Christian society, care for other things and not people.

    Liked by 1 person

  4. Your email just really resonated with me and it would take too long to explain it here. My colleagues overseas just shake their heads sadly when they see the fear, pain, trauma, indebtedness and such that our health care system creates. That is not saying that others have perfect healthcare in other places, but the huge cost of healthcare in the States is not only ridiculously expensive and financial, but emotional and spiritual and physically draining for caregivers as well as you reveal here. And not equitable. And at a time when you need to rally yourself and loved ones and your clearheadedness for your child, you have to navigate a whirlwind of insurance understandings/mistakes in billing/unknown resources and frightening things that may seem just “routine” to multiple doctors/agencies/hospital departments, etc. I will never forget the “nurse manager” from insurance who called pretty much 3x weekly when my son was in NICU to ask “how much longer they anticipated his stay” and I was beyond overwhelmed when we had to debate about a single trip in an ambulance (private cost– I found out) to get a second opinion…and I could just go on and on. Thank you for sharing this and I will add my prayers for you and your daughter… as she is the same age as my twin sons who are also due for eye exams. Much love to you as you navigate all of this.

    Liked by 1 person

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