18-year-old Jake Vollmer is a Cardinals fan – a big Cardinals fan. His room in his family’s Florissant home is covered in Cardinals baseball memorabilia, including posters, hats, bobble-heads, jerseys and a Missouri license plate decorated with the ‘red bird’ that reads “#1 Fan.”
While he was one of thousands of St. Louisans thrilled to see the Cardinals triumphantly win the 2011 World Series, Jake is unique from thousands of his fellow fans.
As a child, Jake was diagnosed with Duchenne muscular dystrophy, a rapidly-worsening form of muscular dystrophy caused by a defective gene for dystophin, a protein in the muscles. Despite being in a wheelchair for more than ten years, Jake still participated in all the things kids love to do growing up including swimming, going to camp, riding horses and playing his favorite game – baseball.
However, Jake recently spent nine days in St. Louis Children’s Hospital in the Cardiac Intensive Care Unit due to complications from his condition, which has increased in severity as he has gotten older and won’t improve. It was here, through the hospital’s Pediatric Advanced Care Team (PACT), that Dr. Joan Rosenbaum met Jake and his family.
A neonatologist by trade, Dr. Rosenbaum has been at St. Louis Children’s Hospital since 1986, working in the Newborn Intensive Care Unit (NICU). But in 2009, she went on sabbatical to participate in the Kenneth B. Schwartz Fellowship in Pastoral Care, a program that focuses on the development of skill, and competence in addressing patients’ and families’ existential, spiritual, and religious concerns as they are faced with potentially life limiting or life threatening diseases. Rosenbaum then came back to work at Children’s and to start the Pediatric Advanced Care Team (PACT), the hospital’s palliative care program funded by the St. Louis Children’s Hospital Foundation.
“Palliative care is the perfect blend of spirituality and medicine,” says Rosenbaum. “It takes a holistic approach to helping a child, from the spiritual, to the emotional, to the physical.
The purpose of PACT is to ease the suffering of a child with a potentially life-limiting illness and provide the support patients and their families need to cope with a life-altering outcome. “Our goal is to help children live as long as possible and as well as possible,” says Rosenbaum. “We are really walking that journey with the families we serve.”
Now back home with his mother and his grandmother, Jake is resting and receiving home health-care assistance and support services through BJC’s Wings (a pediatric supportive care program) and PACT. Before going home, Children’s Hospital’s Patient Advocacy Coordinator Dwayne Ingram heard about Jake from Dr. Rosenbaum and recruited other staff and outside individuals to help fulfill two of Jake’s “wishes” – to meet and hang out with the Cardinals’ beloved mascot Fredbird, and to graduate from high school.
And Jake will graduate – on May 20, two days after his 19th birthday. His fellow McCluer North High School students have missed Jake around school since he has been sick. In fact, because they are known as the McCluer North “Stars,” students created “1,000 Stars for Jake” – one thousand paper stars carefully folded in origami style by students that reveal a thoughtful message when unwrapped. When asked how the gift made him feel, Jake responds with a smile, “It made me feel really good.”
Jake’s other wish was fulfilled on February 1, when Fredbird surprised him at home. The two posed for photos in Jake’s room, where Fredbird was able add to Jake’s Cardinals collection, bringing a signed baseball, T-shirt and Fredbird bobble-head. Fredbird also posed with Jake’s mom Julie, who too enjoyed the visit from the Cardinals mascot and seeing the smile on her son’s face.
Julie and Jake are close. They spend time playing trivia together, both on the computer and at trivia nights. “He gets all the sports trivia right,” she says. She is grateful for the support from PACT and Dr. Rosenbaum as well as the quality of care provided by all of the St. Louis Children’s Hospital doctors and nurses who have taken care of Jake over the years. When asked what gives her strength in this difficult time, she pauses a minute before speaking. “Take each day at a time and have fun every day.”