As Central Michigan University music instructor Mark Cox walked protest lines with his daughter Sarah, the demonstration took on a meaning more tangible for the family than collective bargaining or shared governance.
Suffering from acute lymphoblastic leukemia, a severe form of cancer, Sarah’s medical coverage hung in the balance. Negotiations between faculty and administration came to a halt in the fall of 2011, resulting in a work stoppage of the CMU Faculty Association.
Two years and more than $1 million in medical expenses later, Cox and his family are proud to say Sarah, 13, defeated her illness and can return to her life of opera singing, acting and playing the French horn.
She received cutting-edge treatment at Devos Children’s Hospital in Grand Rapids.
“This is one of the reasons we fight so hard for good health insurance,” Cox said. “Out of all our (medical) expenses, we only paid a fraction. That’s why it’s worth going on strike. Sarah walked the line with me.”
Cox is so proud of his daughter’s victory that he is planning an art installation to commemorate her fight as part of Art Drive, a contest hosted at Grand Rapids restaurant San Chez. His 3-by-7-foot entry is comprised of a large “S” for Sarah – and for “strength.”
“It hits close to home with Devos being nearby,” said CEO of San Chez Cindy Schnieder. “Community outreach is definitely in our culture. Mark and his family frequented our restaurant a lot, even before Sarah got sick. They’ve been a strong fan base and are super protective of one another. They celebrate life together.”
Along the path of the “S,” Cox fastened several photos taken during the illness. The project will contain about 10 pictures, which will document her almost three-year ordeal. Images during Sarah’s chemotherapy will be presented in black and white.
In early July, Cox opened an account on Kickstarter, an online funding program for creative endeavors, to help cover the costs of his vision. He estimates the overall cost to be between $3,500 and $4,500.
Registration for the contest begins on Sept. 14 with the contest opening on Sept. 18. A first-place entry will receive a prize of $200,000, but Cox said it’s about more than winning.
“Originally, I wanted to take pictures for our family history, nothing sensationalist,” he said. “It was about the beauty of the person, not the ugliness of cancer. When you’re in the middle of treatment, you can lose hope.”
And when a reporter from Yahoo! found the entry online, the family was launched into the national spotlight.
“It was a complete and utter surprise,” Cox said of the media attention. “All of a sudden, I started getting funding from people I didn’t even know. A bunch of other websites kept asking if they could use our story.”
Aggregated across the web on MLive and even Disney’s parenting site Babble, the family remained firm that the mission was to show the optimism in Sarah’s recovery.
“When you’re in the middle of it, you just take it one step at a time,” said Sarah’s mother, Mary Jo. “Just go through the steps. Each day was a check off. We also had confidence in what (doctors) were doing. That was a big help.”
Diagnosed in June 2010 at the age of 10, Sarah went into remission one month later. She estimated that she was given about 40 injections during her treatment, which lasted until January 2013.
She sustained nine spinal fractures as a result of the illness and had to wear a back brace for nine months to be stabilized.
Sarah said her main concern throughout the ordeal was for the waist-length hair she was so proud to have grown beforehand. During chemo, Sarah was still able to act in plays at Shepard Middle School, but refused to wear wigs and was happy to play male roles instead.
“I was most scared about losing my hair,” Sarah said. “I always wore hats and bandanas; no wigs. That’s just not who I am and I don’t really care what people think.”
At home, during the longest leg of her recovery, Sarah’s parents worked hard to not only provide her with the necessary care, but to strike a balance with her little brother, seven-year-old Liam.
“Keeping the balance with Liam was difficult,” Mary Jo said. “One of us would always stay with him to try and keep things as normal as possible.”
Cox hopes that the project will not only showcase the strength of his daughter, but will provide optimism for families during times of turmoil.
“It’s been great showing what can be done about cancer,” he said. “The message is just hope. As a parent, hope can really fade. But there is a good end.”