In November 2013, a radiologist explained to me that my eight-year-old daughter Sammi’s aorta was smashing her esophagus into an unnatural shape that trapped food inside it every time she ate. After receiving that news — and the news that we needed to get my daughter evaluated by a cardiothoracic surgeon as soon as possible — I took my daughter to school.
A few days later, after confirming the referral with my daughter’s previous doctor and scheduling a CT scan for her, I went to meet with a client about the web site project I was managing for him.
During that week, and every week for the next several months, I researched upcoming medical tests and procedures and I volunteered in my daughters’ schools. I took Sammi to doctors’ appointments and managed my client project load. I planned travel. I spent time with friends. Everything looked the same, and for my daughters, everything felt the same.
Nothing was the same, though.
Waiting to find out what would happen next for Sammi was excruciating. It took over a week to hear from the surgeon about what he wanted to do next, and then another until the CT scan was scheduled. During that time Sammi’s symptoms — mainly complaints that food kept “coming back in [her] mouth” — continued, but I let go of all attempts to problem-solve and let her eat whatever she felt she could. For her, this change of heart wasn’t suspicious so much as it was glorious: all the fruit she wanted! As I watched her eat a pint of raspberries in a sitting, I mentally took stock of her other favorites and eliminated from my shopping list anything that I thought could hurt her. After all, whatever passed those bends in her esophagus would press into her aorta. I waited, kept the fridge stocked with fruit, and worried.
I worried like crazy. What was happening in her chest each time she swallowed? There was nearly a month between the terrible phone call with her gastroenterologist — when he told me he’d never read her chart all the way through — and the date of the diagnostic test the cardiothoracic surgeon scheduled. During that month, no doctor called to tell us how to care for Sammi: what she could eat, what we should consider worrisome, what the prognosis for her might be. No amount of research I did came up with anything that looked like her situation. We were alone and improvising.
As I asked in that previous post, what would our situation have looked like if anyone at all — the radiologist, the gastroenterologist, the cardiothoracic surgeon, the hospital itself — had identified our situation as one that could have benefitted from some emotional or logistical support?
During the months that followed this revelation, I became friendly with the parent of one of my older daughter’s preschool friends. I saw him often in the coffeehouse where I often sat and worked on my laptop. He had become locally well-known when his son was diagnosed with leukemia – an unwanted fame to be sure, but one that had come from the outpouring of support from the community when the family was in search of a bone marrow donor (which, thankfully, they found). His son was admitted to the hospital where Sammi had been so often for her own procedures, and when he stopped at the coffeehouse on the way to see his son, we occasionally talked for a few minutes about how his son was doing and what life was like as an inpatient.
“Are you and your wife doing ok?,” I asked him nearly every time I saw him. “Do you need to talk?”
He was always gracious but seldom needed my ear. The oncology department, he explained, had a protocol for families. The minute a definitive diagnosis of cancer can be determined, a social worker is at the door of the hospital room, ready to talk to the family or the child immediately. There is a social worker assigned to each family for the duration of the child’s treatment, in fact. The family can count on that person to help them through patient advocacy as well as to connect them to a longer-term therapist. My friend felt well-supported; scary as it was, there was a system in place to support the whole family however it could.
Contrast that with the emotionally unsupportive response my family experienced after both a chronic disease diagnosis and a highly disturbing test result: crickets, chirping in a dark night.
As we waited for anyone at all to flip on a light, suggest a next step, or reassure us in any way, we just kept buying fruit, going to work, and waiting.