I’m not quite sure where to begin this essay. I supposed I should start with Facebook, where I saw a posting from a local photographer: “Come to Reno’s Pickett Park, across from Renown from 9am-12pm TOMORROW. Save 4-yr-old Tanner’s life by being a bone marrow donor. He already has a rare disease and now he has leukemia.” September is also National Childhood Cancer Awareness Month, and Renown has an annual Childhood Cancer Awareness Day, which also happened Saturday morning at Pickett Park.
I went with the intention of getting on the bone-marrow donor list and writing about how the community comes together to help sick people. I came away conflicted because I got a bit of a lesson in how the larger community doesn’t really support sick people—or at least, not like it should.
And the thing is, nobody said that to me. Certainly, I didn’t get it from Wendy or Alexis Bertauche who seemed upbeat and thankful for all the help they’ve gotten. Wendy and Alexis are the parents of Tanner and two other boys as well.
But Tanner’s the reason many people were at the park the other morning. More than a year ago, he was diagnosed with juvenile xanthogranuloma (JXG), which is a white blood cell disease. In Tanner’s case, it caused lesions above and below his voicebox. The treatment, which sounds very like a chemotherapy treatment for cancer, eventually may have caused myelodysplastic syndrome (MDS), a pre-cursor to leukemia. Although since the JXG is in his bone marrow now, and so little is known of the disease, that the MDS was caused by the chemo is uncertain. His parents have a blog at www.caringbridge.org/visit/tannerbertauche, and for the real, step-by-step story, I’d suggest reading the blog starting at the oldest entries and reading forward.
Both Wendy and Alexis have been publicly optimistic and hopeful through the ordeal. Even when Alexis lost his job a few weeks after the diagnosis, the two still believed in Tanner’s eventual return to health. They theorize that there may be a connection between the diagnosis and the lay-off because of the company’s ESOP insurance, but that’s speculation.) The family has been paying for COBRA since October 2008.
Tanner’s story is horrible. And beautiful. And depressing. And inspiring. The Bertauches’ blog uses many words no one would ever want to see applied to a family member; words like tracheotomy, transfusion, feeding tube. Words that should never be applied to a toddler. Another phrase that no child should ever know: He’s reached the lifetime insurance benefit of $1 million. In other words, because Tanner’s so sick, the insurance company will no longer pay for his treatment.
Wendy mentioned that the family belongs to the congregation at Our Lady of the Snows Catholic Church. She wasn’t at all surprised to hear me talking about doing a column on faith at the blood marrow donor drive.
She looked around the crowded park with people laughing and children playing its booths to highlight and pass information on childhood cancer. “Faith is here in action today.”
I end this column as uncertain as I began it. On the one hand, I can see how members of the Reno-Sparks community turned out to try to help this desperate family. More than 100 people signed up to be bone marrow donors. On the other hand, our community includes everyone in this United States of America, and we make the decisions that dictate how insurance companies can treat our fellow citizens. I don’t know. I don’t know.