Children’s Hospital Colorado Means ‘Everything’ to Bexley and Her Family
August 31, 2022
Children’s Colorado, Colorado Springs has come to feel like a home away from home for Bexley since being diagnosed with Acute Lymphoblastic Leukemia as a toddler, and the cancer team has served as a lifeline for the whole family.
Although most of her young life has been spent fighting an invisible enemy, Bexley has never let her diagnosis define her. Just a toddler when she was diagnosed with Acute Lymphoblastic Leukemia, the now 5-year-old will soon complete three years of treatment at Children’s Hospital Colorado, Colorado Springs.
“Bexley is scheduled to be done in November 2022, and we’re eagerly counting down the days,” says her mom, Jenny.
She’s currently wrapping up the final phase of her lengthy treatment, which is focused on making sure the cancer won’t return. It’s been long journey for the whole family, especially since Bexley was diagnosed right before the COVID-19 pandemic began.
Cancer treatments can affect the immune system, making patients more vulnerable to infections, so everyone in the household has needed to take extra precautions to minimize any exposure to illnesses.
“Throughout her treatment we’ve focused on having her at home and what we could do there, and just spending more time together,” Jenny says.
For Bexley and her three older brothers, who have been her constant companions and biggest cheerleaders, that’s meant countless days riding bikes and playing board games. After evading COVID-19 for almost two years, Bexley tested positive for the virus in November 2021. She spent several days in the hospital at Children’s Colorado due to experiencing severe respiratory symptoms related to a secondary infection.
“It was pretty scary,” Jenny recalls. ”There were three days where we just weren’t really sure she was going to survive.”
Through it all, Children’s Colorado has come to feel like a home away from home for Bexley, and the cancer team has served as a lifeline for the whole family.
“Children’s Colorado means everything to us,” Jenny says. “They have always listened to us. They take into account we have three other kids and have worked with us so much.”
Added Bexley, “I see the nurses there, and they are my friends forever.”
A heart for philanthropy
To give back to those who have given so much to them, the family has sought opportunities to help other kids battling cancer and other serious conditions at Children’s Colorado.
During hospital visits, Bexley often brings a bright pink wagon filled with donations of toys and activities for patients. The family’s foundation recently raised money to fund the installation of a large “warrior bell” outside the hospital. It’s customary for oncology patients to ring a bell on the cancer unit when achieving a major treatment milestone. Now, the new bell allows all patients overcoming a life-threatening illness to commemorate their health victories.
“We just want to help in any way we can, turning something that could potentially be sad into something that can be celebrated,” Jenny says.
Bexley is giving back to the hospital in other ways, too. In her role as a Children’s Colorado Ambassador, Bexley’s fundraising efforts are devoted to supporting childhood cancer research. (Donate to her fundraising page.)
Helping find a breakthrough
Beyond raising money, Bexley’s family opted to enroll her in the Children’s Oncology Group (COG) at the beginning of her diagnosis, providing permission for Bexley to participate in research study opportunities. Children’s Colorado’s Center for Cancer and Blood Disorders is one of the member institutions that makes up COG, the world’s largest organization solely dedicated to childhood and adolescent cancer research.
Throughout her treatment, Bexley has been enrolled in several different studies, which have ranged from data collection to therapeutic trials. She is currently participating in a randomized clinical trial that is testing a continuous, 28-day infusion of a drug that modifies the immune system, strengthening it, to see if it will benefit patients with ALL who are classified as high risk for relapse.
Bexley was not assigned in the group to receive the medication, because her type of ALL is classified as “favorable” among the risk categories and thus underwent a standard treatment protocol. But she does regularly get her blood drawn and receives other monitoring as part of the study.
“We hope her participation can help in the future, so pediatric cancer research continues to move forward,” Jenny says. “If we can do anything that lessens a child’s treatment time or leads to a breakthrough at some point, we are 100 percent going to — so parents and kids don’t have to go through so much heartache.”
Karol Kerr, MD, Bexley’s pediatric oncologist, says she is grateful for the family’s support of childhood cancer research and admires the strength they have shown throughout Bexley’s diagnosis and treatment.
“The entire family has been optimistic and full of energy. They came into to this with the thought process of ‘let’s tackle this,’” Dr. Kerr says. “They were not going to have a cancer diagnosis put a big damper on Bexley having a normal childhood.”
And Bexley is doing just that. In August, she began kindergarten, and for the first time ever, she and her three brothers are together at the same elementary school.