Meet Our 2023 Patient Ambassadors
Auggie loves playing chess, riding bikes and outdoor adventures. But when he was just 3 years old, Auggie's parents became concerned with his low energy and intermittent fevers and headaches. His dad also noticed that his skin was a different shade of pale they had never seen before and that Auggie had the same bruise on his forehead for two weeks.
During a visit with the pediatrician, Auggie's doctor felt his stomach and noticed that it was bloated. He also saw that his skin was bruised just from the car seat straps. He sent Auggie to the Emergency Department at St. Louis Children's Hospital where they began running tests throughout the evening. Like most 3-year-olds, Auggie wasn't that fond of needles, but Child Life Specialists made the blood draws near painless and helped distract him from everything going on.
Later that night, doctors diagnosed Auggie with leukemia. The next day, his cancer was labeled as B-cell acute lymphoblastic leukemia — when the bone marrow produces an abundance of abnormal B-lymphocytes, a type of white blood cell that helps the body fight infection. For the next month, Auggie received treatment at Siteman Kids at St. Louis Children's, which included several different oral and intravenous chemotherapy drugs, as well as oral steroids. During his stay, Auggie enjoyed arts and crafts with the Child Life Specialists to help ease his mind and give him a chance to do everyday activities while in the hospital. His parents credit the Child Life team with developing Auggie's love for the process of creating art.
After four weeks, Auggie came home to the great relief of everyone. He has been in remission since August 2020 and continues to visit St. Louis Children's monthly for checkups. In October 2022, Auggie's chemo port was removed. The Child Life team continued to support Auggie when he visited and even helped him celebrate the end of his cancer treatment at his bell ringing ceremony. Now 6 years old, Auggie can't wait to go swimming in the lake this summer — one of the restrictions he faced due to his treatment.
Your gift through programs like KIDstruction Week helps fund resources like Child Life Services, which advocate for the optimal growth, development and well-being of patients who need their support, just like Auggie.
Bella isn't a kid who likes to be inside sitting down. The 7-year-old is a social butterfly, full of energy and makes time to play with her cousins as much as she can. She’s also living with a lifelong condition that requires care from St. Louis Children's Hospital.
When she was 8 days old, her mom received a call that would change their lives forever. Bella's newborn screening came back positive for sickle cell disease — a genetic disease that alters the shape of the body's red blood cells, causing them to become sticky and trapped in the body's blood vessels. Knowing their daughter was living with the disorder left her parents devastated, but they knew they had to stay strong for Bella.
Since Bella's diagnosis, she and her parents have been under the care of the sickle cell program at St. Louis Children's, the largest and most experienced program in Missouri. Over the years, Bella and her family have relied on their care team to help them stay educated on the disease and manage her symptoms, which include anemia, pain and infections. When Bella attends her routine sickle cell appointments, the Child Life Specialists, including facility dog Casey, help to ease her mind during lab work and outpatient treatments that help her avoid pain, hospitalizations and organ damage.
When she is hospitalized due to complications from her disease, Bella likes to go to the Child Life playroom to escape the reality of her disease. She especially enjoys playing with the kid's kitchen and pretending to fix things with the play tool set. And when Bella isn't feeling up to leaving her room, the Child Life team comes to her room and brings toys she can play with from the comfort of her bed. This makes the inpatient experience less scary for Bella and helps her stay brave while inside the hospital walls.
Bella and her parents continue to manage her disease with medication and make sure to attend her routine medical appointments. Every time she comes to the hospital, she spends time in the Olson Family Garden or visits the Child Life playroom, two of her favorite places at St. Louis Children's.
Your gift through programs like KIDstruction Week helps fund resources like Child Life Services, which advocate for the optimal growth, development and well-being of patients who need their support, just like Bella.
Colin and his parents didn't know it at the time, but his unexplained transition from expert hockey skater to falling all over the ice was telling of the news to come. His parents could tell something was wrong because he had always been such a great skater. They even tried new skates to see if that was the issue, but nothing seemed to fix the problem.
In June 2014, Colin and his mom came to St. Louis Children's with concussion-related side effects from a hockey incident. When the care team saw the MRI results, they saw the tumor in his brain. Within four days, Colin underwent surgery to remove the tumor, and the surgeon was able to remove 100%, which isn’t always possible due to the area where these tumors live. The official diagnosis was stage 4 medulloblastoma, a tumor that begins in the bottom part of the brain or spinal cord, is malignant and fast-growing.
Colin and his family were in the hospital for about three weeks while he recovered from surgery and his team created a path for treatment. During this time, he developed friendships with the Child Life team while he was disconnected from his friends and unable to spend time with them as he normally would. He received social and emotional support from the team even when he was too sick to attend the group play sessions through personalized in-room activities.
The following month Colin started radiation and chemotherapy, relying not only on his family but also his friends in Child Life to keep him occupied during his treatments. Colin used their time together to escape from the hardships of chemotherapy and socialize and play card games like Uno.
After nine rounds of chemotherapy, Colin finished his treatment about a year after it started. He has been in physical therapy since the side effects continue to affect his balance and coordination. Because of his falling tendencies, Colin had to stop playing sports after he kept falling on the same hand and needed a complete tendon reconstruction. Colin now spends time focusing on what’s best for him and staying aware of his limitations while maintaining a positive outlook on life. Because of the rarity of his tumor, Colin may never hear the word "cured," but he and his family are thankful for the care they’ve received over the past nine years. His time with the Child Life team made such a deep impact on Colin that he now wants to pursue a career as a child life specialist.
Your gift through programs like KIDstruction Week helps fund resources like Child Life Services, which advocate for the optimal growth, development and well-being of patients who need their support, just like Colin.