Just a few days before Christmas of last year, my nephew, Rory was admitted to Boston Children’s Hospital. An MRI a few days earlier had revealed two brain tumors, one pressing on his optic nerve and another embedded deep in his brain. It was the tumor pressing on the optic nerve that was causing vision loss, a warning sign his ophthalmologist had flagged earlier in the summer. The ophthalmologist ordered an MRI in August, which was denied by insurance, then ordered it again. It was finally scheduled for December. The MRI led to a biopsy, which led to a prescribed course of chemotherapy: weekly treatments for 12 months. A year. My sister, her son, and her entire family have been on a painful and heartbreaking journey since then. He is now six months into treatment and recent MRIs have revealed progress, when progress is measured in the smallest of fragments. Any shrinkage, as minuscule as it may be, is good news. When I first asked my sister if I could set up a LFEBridge for her she spent about twenty minutes telling me why it was not necessary. They have good insurance. They have stable jobs. They have support. They don’t need it as much as others. But even with all of that, there are so many costs to something like this. There are clear and visible medical costs even with "good" insurance (and let’s be honest, how good is insurance really if they deny a necessary MRI?), like an emergency ambulance transport that cost $9000 and was denied by insurance. And while you can appeal, get the price reduced, then appeal again with letters from your doctors, the battle of fighting for coverage is, in itself, a cost. Sure there are interest-free payment plans, which help. But there are still payments. There is the cost of gas and parking, the four-hour round-trip drive, and the wear and tear on the car. Then there are unseen costs, the emotional and mental health toll that my sister, her husband, and other children are bearing. With the focus on Rory’s health and well-being, sometimes the support people get forgotten. They are paying a price too. One that could be helped by therapy and counseling (another thing insurance won’t cover). I asked my sister if the help was there, would she take it? Yes, she said. So, I’m asking you to help. A little or a lot. Whatever you can manage. On my sister and nephew's behalf, thank you so much. Sarah
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