When Kim O’Leary was diagnosed with Burkitt’s lymphoma, a type of cancer that had invaded her lymph nodes and caused tumors in her abdomen, her biggest worry was her then 6-year-old son Andrew.
On her 39th birthday, Feb. 6, 2013, O’Leary was starting chemotherapy on the myelosuppression unit at Vanderbilt University Medical Center, a place Andrew wouldn’t be able to visit. O’Leary teamed up with Jaime Bruce Holliman, the new Child Life specialist supporting children of adult patients, to plan a “surprise” birthday party to be thrown by Andrew. He picked the theme: Star Wars.
“It gave him a sense of purpose in a way, to come in to help celebrate Mommy’s birthday instead of coming into a ‘scary’ hospital. It just was the best way to start it out. Being able to make choices about setting up the party before the next steps of introducing Mommy having cancer helped him so much,” O’Leary said.
Child Life specialists are common at the Monroe Carell Jr. Children’s Hospital at Vanderbilt, where they help young patients understand and cope with illness and hospitalization. Holliman is forging new ground at Vanderbilt University Hospital, to share the same services with children coping with the hospitalization and illness of their parents and other close family members.
“My role is really to limit how traumatizing the visit is, to make it more of an empowering experience, explaining what is happening to their loved one. It’s taking the medical information and breaking it down so that a 6-year-old understands what leukemia is or what encephalopathy is and understands the things we’re doing for the person they love,” Holliman said.
Holliman covers a lot of ground between the Critical Care Tower, trauma ICU, cardiovascular ICU, burn and palliative care units. She supports families with a range of diagnoses, from long-term cancer treatment to a sudden car accident or stroke. Anyone working in the hospital, from physicians and nurses to social workers, can call for a Child Life consult through WizOrder.
As the culture of medicine becomes more patient- and family-centered, children are present in the hospital more often.
“When your family is in crisis, the normal response for a child is to want to be together with their family. We’re so used to protecting kids from things that are hard that sometimes we need a little help knowing how to bring them into the fold during a medical crisis,” Holliman said.
One of the tools Holliman uses to prepare children to see their parent in the hospital is a personalized photo tour created on her iPad. She photographs each piece of equipment in the room individually, and then an overall photo of the entire room.
“Going through those one at a time, explaining how each piece of equipment is helping their parent really makes the experience less scary. Then the child is more prepared to see the whole scene, and it isn’t as overwhelming the first time they walk in.”
Holliman said safety is always the first concern. She often shows young children the medical equipment before entering their parent’s room, so it is less enticing when they meet.
“We want to make sure it is safe for the parent to have visitors and make sure it is emotionally safe for the child.”
She also has many resources for art projects and other mementos, to build a legacy that children will remember. A favorite activity is imprinting thumbprints in modeling clay.
“I have families make a coin with the patient’s thumbprint and one with the child’s thumbprint and then have them exchange. I talk about how when you’re at school, you can have a little piece of your dad in your pocket and your dad can keep your thumbprint while he’s in the hospital.
“A thumbprint is special and nobody else in the world has a thumbprint like your dad. We do that for separation during a lengthy admission and also at the end of life. The family will often put the child’s thumbprint into the casket with the parent. It helps maintain that connection,” Holliman said.
Kim O’Leary had worked as a Child Life Specialist and Children’s Bereavement Coordinator in community bereavement groups for children of adult patients, and knows the importance of those services.
“Child Life is such a great resource for people who don’t have my background, providing support along the way so the child has a relationship with that person and knows they are in a safe place,” she said.
“Jaime was the first person Andrew saw in the hospital, and she greeted him with a huge smile. I just wanted him to start his visit having fun and not being scared, and she made that happen. She provided many valuable resources to help him cope, have fun, and be prepared with diagnosis and separation so I could step back and stop being a Child Life Specialist and be a parent.”
Even though her Child Life training made O’Leary more prepared than most to face tough conversations with children, she asked for Holliman’s support to explain her cancer diagnosis to her son.
“I asked Jaime to be with me in case I needed help to explain it or got emotional, but she respected me as a parent. Afterward she said she couldn’t have done it any better and having that validation meant the world to me,” O’Leary said.
Holliman agreed that her most important job was encouraging parents that they are doing a great job.
“I think it’s important to work from a strength-based model. These parents are already in a compromised situation because somebody is really sick, they haven’t slept and they’re panicked. I try to build their confidence in their own abilities. I tell them I’m not the expert on your child. You are the expert on your child.
“I just happen to do this job every day where I’m working with families in similar situations to yours. I have a lot of tools and information, and maybe there are things you will want to try.”
Before Kim O’Leary started many months of chemotherapy visits that left her incredibly ill, she had a wonderful birthday party with her son. They exchanged gifts and thumbprints, and took beautiful photos to remember the occasion.
Today, scans show that O’Leary is cancer free, but she is being monitored closely. She says if the cancer returned, her first call would be to Child Life.
“I had been the primary caregiver, and it was wonderful to know there was a support system who could be there to help. I had to take care of myself and couldn’t always focus on my son. I knew Jaime was there and they had a relationship and that brought so much peace,”O’Leary said.