I have read many books focused on patient advocacy and one of my favorites is “For the Love of Scott” by Jo Hamilton. She gave this book to me a year before I painted her jacket story. I read the book and was amazed by all the subtle foreshadowing of her life to come in the stories of her childhood. The tone of her book reminds me of the Little House and the Prairie stories by Laura Ingalls Wilder. Her family story is warm and loving though it depicts a tragedy.
I painted “The Keeper of the Match” for Jo to tell the story of the love she has for her brother.
Jo grew up on a farm and was used to the reality of farm life. When she was a girl she loved a farm pig named Spot. She would ride spot and talk to her. Spot was a very smart pig. One day she called for Spot and she did not come; Spot was gone. She asked her father what had happened. Her father told her Spot had “Gone to market.” Jo did not question what this meant and just accepted it as part of life on the farm. Jo also helped her father in the barn by cleaning up 14 piglets newly birthed by a sow. She was only a little girl but was already becoming a caregiver. So I painted a piglet in the lower corner of the painting.
Jo’s youngest brother Scott was born in September of 1960. Although Jo had hoped for a sister, she fell in love quickly with her little brother. She would rock him endlessly and was so happy when they found a milk substitute for him made from soybeans. Scott was allergic to milk and the soybean formula saved his life. So I painted soybeans in the top panels of the painting.
As many children are wont to do Jo and her brothers played with fire as youngsters. Jo and her older brother Denny were considered responsible enough to light matches and burn trash. They were still children though, and decided to try to mimic adult smokers by smoking cornhusks. As Jo tried to inhale the burning cornhusk, a breeze came up and roasted her hair and eyebrows. Her little brothers watched with horrified awe. Jo knew she had to be a good influence for her little brothers, as she was the keeper of the matches.
As Scott grew he became an avid baseball player. Jo was able to attend many of his games when she was an adult and Scott was in high school. Scott was so good that he went to college on a baseball scholarship and was eyeing the minor leagues.
In August of 1983, Scott began complaining about back pain. He went to the doctor. The doctor was concerned as he found a lump in Scott’s groin. Scott had testicular cancer. Scott had surgery and went on the have aggressive chemotherapy. Due to Scott’s great physical shape prior to illness he was tolerating the chemo series fairly well. By the third session a CAT scan revealed that his abdominal tumor was gone.
Scott did not want to complete his fourth and final round of chemo. The family was not sure it was necessary. The doctors pressured him to continue. Jo counseled Scott with, “It’s only five more days of chemo.” But she told him that the choice was his.
Scott began his final round. This session was excruciatingly painful. Scott felt like his veins were burning up. Scott was given a Cisplatin overdose. He had been given 3 times the daily dose for five days due to a mixing error. No one ever checked the labels on the bags. So I painted the provider with his hands behind his back.
One of the last rational things Scott would ever say during his very painful death was to his sister Jo. “Jo you have to tell people what they have done to me, you have to tell them!” Scott began hemorrhaging throughout his body. He was given paralyzing medication to keep him still. The family stayed by his side throughout the onerous ordeal. He struggled on eventually receiving 74 pints of blood.
In late December Scott seemed to be recovering, he was going to be taken off the ventilator. A nurse determined there was a hole in the PEEP tubing, which compromised his oxygen level. After suffering a massive overdose Scott died from another preventable error.
So this is Scott’s story and it still burns. This is the story that Jo is still telling three decades later. She will never stop telling it because Jo is the keeper of the match.