Advocacy helps family cope with cancer’s impact on their lives
By Tracy Bennett
August 15 marks an important day in the lives of 7-year-old Jenna Cain and her family. It was the day five years ago that she was diagnosed with Acute Lymphoblastic Leukemia (ALL). It is the day that each year since then the family has celebrated Jenna’s Day of Kindness. It is the day this year that will hopefully represent a turning point in Jenna’s life—the day she goes from being in remission to being a cancer survivor.
Jenna is the oldest of two children born to Julie and Aaron Cain of Spring Hill, Kan. Little brother Wes is 3. The Cain’s love story began in high school, became a long-distance relationship in college, and culminated in marriage 13 years ago. Jenna came along seven years later.
Like many first-time parents, you have nothing to compare to as your child experiences illness. Jenna seemed to be developing normally then began a slow decline that was hard to pick out when you’re so close to the situation. One day family, who hadn’t seen Jenna in a while, visited. They immediately took notice that something didn’t seem right. By the end of the weekend, Julie had an appointment with the pediatrician and a gut feeling this could be cancer. Her worst fears were realized when the doctor sent her immediately to Children’s Mercy Hospital to try to jump start Jenna’s immune system.
“As a mother, it’s the most horrifying thing to find out your child has cancer,” said Julie. Jenna was just 2-1/2 years old. What followed was six months of intensive treatment—three to four days of chemo therapy every two weeks. Then two years of less intensive treatment, including spinal taps every three months. She completed chemo in February 2015. “It took six months after that for her immune system to recover,” said Julie. Despite treatment being over Jenna missed 20 days of school during Kindergarten. “Getting exposed to all those new germs meant she caught everything and brought it home. We were all sick that year,” said Julie. First grade, which she just completed, went much more smoothly.
Cancer doesn’t define her
Jenna doesn’t like to talk about cancer. In her way, she understands something adults often have trouble grasping. She’s not defined by her illness. Reserved and wary of new situations, Jenna is a bright, observant kid. She’s obsessed with Shopkins characters, loves to have sleepovers with friends, is involved in Girl Scouts, and is trying cheerleading for the first time. The day the family was interviewed, Jenna had written and illustrated her very own book called, “My Favorite Rides.” One of her creations is a tree featuring a pulley and cable system that attaches to a basket to carry people to the treetop. She writes: It pulls it up to the top of the tree then it goes down. Then it comes up and down, up and down, up and down. According to Aaron, Jenna makes several of these books every week.
Asked how Jenna coped with more than two years of treatment, her dad says that the support of friends was important. “She could be listless and feeling crummy, but the neighbor boy who is the same age as Jenna would come over, and she would light up.” Likewise, friendships she has made at Camp Quality are very important to her.
Camp Quality serves children with cancer and their families, providing no-cost, week-long residential camp experiences to help children foster life skills and develop their full potential. The organization’s slogan: Letting kids with cancer be kids again. This summer Jenna will attend for the third time. In all there are 15 camps around the United States, located in the Midwest, Texas, and New Jersey. While in attendance, on site medical staff makes it possible for kids to continue treatment while away from home. Learn more at campqualityusa.org.
According Julie and Aaron, part of what makes Camp Quality special is that each camper is assigned an adult companion, who is reassigned to the same camper each time they return. Jenna’s companion is Megan. “She’s like a big sister,” says Aaron. Asked what she likes about Camp Quality, Jenna said: “Swimming, swinging, sleeping in bunkbeds. We get to stay up until Midnight and we get a Midnight snack!”
Impacts on marriage, career, family
Many couples will tell you that the stress of a child’s illness takes its toll on a marriage. The year of Jenna’s diagnosis was a tough for other reasons also. During this time the Cain’s experienced three failed pregnancies. Yet, Aaron says in hindsight, caring for another child during that time would have been extremely difficult.
Managing a child’s healthcare becomes all-consuming. “It carries over into your marriage. I became very controlling,” said Julie. “But we made a decision that cancer would not rule our lives. Communication was key to the marriage surviving cancer,” she said. Aaron says he stayed positive through prayer and with the support of family and friends.
Others are also negatively impacted by long-term illnesses. “Siblings and grandparents are often overlooked,” said Julie. Celebrating the whole family is the premise behind a local organization called Every Day A Hero, which supports pediatric oncology and hematology patients. The group holds an annual fun day and resource fair in order to connect families to existing resources. Julie is vice president of the organization. See a list of resources and organizations, and learn more at everydayahero.org.
Often families must be in isolation due to the child’s low immunity. By providing a clean environment, Every Day A Hero helps families to connect with others that share a similar difficult journey. Children are given the chance to feel like a normal child; adults can connect with research groups and other oncology and hematology resources. Last year’s event, held at Paradise Park in Lee’s Summit, served more than 300 kids. The next event is planned for Spring 2017.
Julie, who is an aviation systems engineer for a local GPS technology products company, said her employer has been supportive. “They allowed me to work from home and to take time off for hospitalizations.” But she warns others, “People understand the first six months, but they lose patience as treatment goes on for years. It’s important to be flexible and understand that a company has a business to run. Try to be flexible and demonstrate your value to your employer, but know your limits.”
Two years after Jenna’s diagnosis, Julie began experiencing symptoms similar to post traumatic stress disorder. Certain events would set off feelings of intense anxiety as she would relive the emotions. To make matters worse, the Cain’s wedding anniversary is August 16, the day after Jenna was diagnosed with ALL. What should be a happy time is forever tied to a very scary time in their life.
They decided to tackle the problem head on. “We are very independent people, and so we were surprised by kindess all around us. One Christmas, extended family gave money to us rather than exchanging gifts among themselves. A stranger bought Jenna a toy while we were shopping at Wal-Mart,” said Julie. “Neighbors brought us meals when we were emotionally and physically drained,” added Aaron. Wanting to repay these many acts of kindness is what gave birth to the Cain’s idea for Jenna’s Day of Kindness.
Every August 15 the family performs acts of kindness to others. Promoted through social media and flyer handouts, individuals as far away as Canada have been impacted. The Cain’s ask anyone who did a kind act or was affected by one to share their story at firstname.lastname@example.org. Someday they will compile a record of these kind acts into a book for Jenna.
The Cains say that cancer has given them a deeper appreciation for life. “It opens your emotions up to a broader spectrum—higher highs and lower lows. We appreciate the little things now,” said Julie. Each milestone Jenna passes—things like starting Kindergarten—are marked by a sense of accomplishment. “I often think, ‘Cancer didn’t steal this moment away,’” said Julie.