In honor of Child Life Month, we’re celebrating the work of the child life specialists who provide support for our patients and families every step of their journey at Lurie Children’s. Meet Lura Carstensen, one of the many child life specialists making a difference each day.
No two days are the same for Lura Carstensen, the outpatient Oncology/Hematology Clinic child life specialist at Lurie Children’s whose work is supported by the Anthony Rizzo Family Foundation. But, each day always begins with a 7:45 a.m. huddle meeting with the lead nurses. While nurses outline procedures, chemotherapy and other activities that may happen for patients during that day, Lura advises on a coping plan for each family.
Patients may not have the same nurse at each visit, but Lura remains a consistent presence of comfort and support. Lura greets each patient and family by name in the waiting room; knows where families are in their treatment journey; and remembers likes, dislikes, needs and fears.
Throughout the day, Lura meets one-on-one with families, helping patients cope with their diagnosis and treatment in an age-appropriate way. Beyond the patient, Lura supports the entire family, providing distraction and an emotional outlet for siblings, as well as a support system and source of strength for parents. Lura is able to provide resources, knowledge and words in a time when parents find themselves in a frightening new situation and often feel helpless.
Since joining Lurie Children’s five months ago, Lura has worked with families during 730 appointments to provide one-on-one support on a range of topics and procedures, including:
Hair Loss: When children with cancer hear from their medical teams that treatment will cause their hair to fall out, it is Lura who discusses with patients how they would like to address their hair loss. Through Lura’s help, some patients choose to shave their heads right away, while others prefer to wait until they no longer like the changes to their hair. Lura’s ability to give these children the power to make this decision has a large impact on their self-esteem and ability to cope with the changes happening to their bodies.
Ports: A port is the metal catheter that is placed into one of a patient’s largest veins. The patient has the port at all times, even when not in the hospital, and receives medication through the port during appointments. Lura estimates that 70% of kids she works with are fearful of having their port accessed during appointments. While the doctors and nurses focus on getting the necessary medicine and chemotherapy into the port to treat the child’s cancer, Lura focuses on making the experience as calm and positive as possible.
Lumbar punctures: During a lumbar puncture, a large needle is inserted in the spine to remove cerebral spinal fluid for testing, or to place chemotherapy into the spine. These punctures can be scary. During the procedure, patients can’t move and feel a significant amount of pressure. Lura developed a prepping tool using a slinky toy as a pretend “vertebra” to demonstrate the procedure in a non-threatening way. Because patients must be curled up into a ball during the procedure, they are unable to access distraction tools so Lura must use her voice to distract patients by talking about a topic of interest such as video games, sports or TV characters.
Brain tumor diagnosis and treatment: Since it’s difficult for many children to understand why they have to keep coming back for more chemotherapy treatments, Lura uses Floam (to represent the tumor) and Play-doh (to represent treatment) to demonstrate the process and explain that each chemotherapy treatment is necessary to get rid of cancerous cells until they are all gone.
Play: Even if an appointment does not require intensive support, Lura is still present to provide patients and siblings with age-appropriate, therapeutic play activities which often help her identify what support a patient or sibling needs. When recently working with a patient who had a feeding tube, Lura provided the child with a doll. After noticing the patient put tape all over the doll’s face, it was clear that the child needed help coping with having a feeding tube.
Anger: Many times children undergoing cancer treatment feel like they no longer have control over their bodies, which makes each visit stressful. Siblings and parents can also often feel stress and anger when adjusting to the diagnosis and their new routine. Lura is there for families to identify the best coping techniques for each situation.
Lura is one of 16 child life specialists at Lurie Children’s. Meet a few other members of the team and learn what they love most about their role in the lives of our patients.
“To be a healing presence in the face of fear and anxiety, to facilitate play in an environment that would otherwise be so overwhelming, to support a patient’s developmental and sensory needs such that they are able to negotiate the challenges of their medical experience, are all reasons I feel the honor, each day, to be a child life specialist.” – Beth K. Ryan, senior child life specialist at Clark/Deming Outpatient Clinic.
“My favorite part of my job is seeing kids and parents smiling in the Lurie Children’s Kenneth & Anne Griffin Emergency Care Center. It can be a really stressful place, but with preparation, procedural support and play our patients and families cope really well. Nothing beats seeing a child smile or laugh during or after a difficult procedure. Knowing my team and I made their time in the hospital a little easier and a little lighter and even a little fun, makes everything worth it.” – Katy Dhein, emergency department child life specialist.
“My favorite part of my job as a child life specialist has to be the unique relationships I get to form with the patients and their families. It is such an honor to be invited along the journey that they are going through. I get to celebrate their victories and support them when times are more challenging. It is also incredibly inspiring to know that to some patients, I am the best part of their day.” – Joe Weismantel, Regenstein Cardiac Care Unit child life specialist.