By Marti Benedetti
Most teenagers who face health challenges might feel sorry for themselves, but not 14-year-old Samantha Robertson. Instead, she has used her time and talent to create medical play dolls that might help other children cope with their illness and treatment at the Children’s Hospital of Michigan.
“I’ve become an expert on my condition,” says Samantha, who was diagnosed with a brain tumor more than four years ago.
Samantha’s father, Chris, says Children’s Child Life Specialist Kathy Richardson has been a big help through his daughter’s health trials. When Samantha was younger, Richardson nurtured her interest in collecting dolls. Now that she is older, she helps her obtain items to make medical play dolls that can be used to teach other kids undergoing procedures Samantha has experienced. “Kathy always makes time to come in and spend time with Sam,” Chris says.
Samantha was an active, healthy 10-year-old when one weekend she developed a brutal headache accompanied by fever and nausea. Doctors established she had chemical meningitis, which produced a chemical virus in the brain. Her and her family’s life took a profound turn when a CAT scan detected a mass. She quickly was referred to Children’s Hospital and diagnosed with a brain tumor that was wrapped around her pituitary gland. Doctors initially thought it could not be removed.
After getting multiple opinions by doctors in Chicago and New York, the family went back to the Children’s Hospital of Michigan. Neurosurgeon Sandeep Sood, M.D., said he would operate to look at the tumor and see what could be done. He removed it during a painstaking four-hour surgery.
Samantha went on to have 33 surgeries at Children’s Hospital, and still spends about a third of her year there, says Chris, who works in the tissue laboratory at a local hospital. As a result of the surgeries, she has two shunts that require periodic adjustments, not unusual for a brain surgery patient.
Because of the location of the tumor, Samantha’s hormone levels became unbalanced. To keep her hormone levels steady, she takes a hormone to control her kidney function, a growth hormone and an adrenalin hormone.
Neurosurgery is one of Children’s Hospital’s Centers of Excellence, which is no surprise given that the hospital uses sophisticated surgical techniques including image guided surgery, intra-operative electrocorticography (electrical recording done on the brain’s surface during surgery) and stimulation techniques in key areas of the brain, Sood explains.
“We are seeing more tumors because of increased awareness and the ability to diagnose earlier,” he says. “It is unclear whether the actual incidence of tumors has increased.”
Samantha has gone to school on and off for four years. She has been home schooled, but maintains a spot on the honor roll, Chris says. Her support system includes her dad and her mom, Ellen, as well as her sister Caitlin, 19, and brothers Nikolaas, 22 and Alec, 13.
Samantha, mature beyond her years, enjoys writing poetry, recording her thoughts and feelings in a diary and maintaining her web site on www.caringbridge.org/mi/sammijean. She says her social life has been greatly impacted by her illness which has kept her from attending school regularly. It’s hard for other kids to understand what she has been through. But she has made friends at the Children’s Hospital of Michigan.
Visteon Bingo was a highlight of Samantha’s time in the hospital. The games, held on three Fridays each month, included prizes for the kids. The program is funded by the company, its employees and through an annual golf outing. Samantha felt so grateful for the program that in a bold move this fall, she spoke in front of 238 people at the outing to thank them for their support. “I had a speech prepared,” she adds.
She hopes soon to get back to school at Roosevelt High in Wyandotte. A rash of headaches lately has kept her home. But she continues to work on the dolls, and says she hopes to be a neuro-oncologist when she grows up so she can help people. “I know a lot about my disease, and I’m proud of that,” she says.
Richardson says medical play with dolls is used at the hospital to reduce children’s fear and teach them about various medical procedures. “As a Child Life specialist, it is our mission to help children cope with the hospital experience,” she adds. “We use the dolls frequently in our interaction with patients.”
When Samantha first came to Children’s, she engaged in medical play with a Child Life specialist. The dolls helped her understand what she was going through. The 18-inch-long, fabric dolls typically are sewn by Detroit Hadassah. The group drops off 300 dolls bi-monthly. The dolls are then personalized for the patient with IVs, central lines and ports and depict medical procedures. They represent different races and wear hospital gowns.
“Sam is unique. She is selfless," Richardson says. “She has taken her great interest in medical science to help other patients. She personalizes these dolls on her own time. The medical play Sam does is very advanced, and she goes to great lengths to put detail into her constructions.”